Junk Theory: DNA, Disability and Reparative Readings
The recent ENCODE findings regarding so-called ‘junk DNA’ have unquestionably redefined the capacity of science to offer new understandings of the make-up of the human body. But, at the same time, these findings constitute a prominent example of how little notice many scientific theories take of the complexity of subjectivity, and its problematising impulses.
Particularly instructive in this latter context is the history of the word ‘queer’ – the way in which it has evolved from specifically sexual connotations in the early twentieth century to become a key tool in questioning the frameworks within which we define ideas around normality and the relationship between subjectivity and the body. Something similar is happening today – the pejorative this time? Crip.
Evolving from gay and lesbian studies at the turn of the late 1980s, and borne from the cultural context of activism and identity politics as a whole, an epistemology of queerness aligned with the social and political necessities of the period. Queer theory is sometimes offhandedly described as a ‘theory of the marginalised’, and there may well be a degree of accuracy in this approximation. But it says so much more about the stickiness of associations, the risks inherent in acts of speaking and solidarity; of asking, telling, and talking back. It’s no wonder that, for some, there is currency in discounting queer theory as a marginal ‘low theory’.
The re-appropriated use of the once pejorative term ‘queer’ serves as a reminder (and perhaps even as a sort of tenet of the field, if we felt the need to grasp for one) of the centrality of discourse, indeed, that words don’t just say things but do things. The resilience and resistance of subjectivity, in all senses of the word, is written into it.
The potency of ‘queer’ is that it has given value and attention to a spectrum of voices and accounts, hitherto marginalised or considered in some way inferior. This process has led to a wider understanding not only of sexual and gender identities but, crucially, of notions of subjectivity itself – as something performative, constantly in production, and bound up with conceptions of language as socially and culturally constituted power.
In a similar move, slang words such as crip, spastic, mong, and retard, once spoken freely and interchangeably, came to be used to name a range of conditions including, (but certainly not limited to), cerebral palsy and Down’s syndrome. Used as terms of insult, these words acquired the power to imply an associated status of lower worth or value similar to those intentions to disparage in an utterance of the word ‘queer’. But now, with the emergence of crip theory and disability studies, we’re beginning to see a timely reappraisal of the performativity of such acts of naming.
One of the most prominent thinkers in the field of queer theory has been Eve Kosofsky Sedgwick, probably most notable for her work in literary studies. Of particular interest here is her concept of ‘paranoid’ reading, outlined in the brilliantly entitled essay, Paranoid Reading and Reparative Reading, or, You’re So Paranoid, You Probably Think This Essay Is About You. In 2006, the essay was included in her collection of work, Touching Feeling: Affect, Pedagogy, Performativity, which connected and explored the relationships between performativity and pedagogy with those of illness and affect.
Arguing that ‘paranoid’ readings rely upon the hounding for and ‘revealing’ of newer, more insidious instances and structures of injustice, abuse and violence (symbolic or otherwise), Sedgwick suggested that what might once have been considered an intellectual methodology – a particularly instrumental one within the field of queer theory – had calcified to become a kind of imperative.
It is of note that Sedgwick had situated this cause for revision in the years following the outbreak of the HIV/AIDS epidemic in North America. She and the AIDS activist and researcher, Cindy Patton, had been considering the possible natural history of HIV amongst the speculation that the virus itself could have been engineered or spread by governmental forces, perhaps as a result of US military experimentation gone wrong, or, indeed, right. She asked Patton if her research had led her towards any evidence to justify or support the rumours. Patton’s response? That even if any of these suspicions had turned out to be true, that it wouldn’t have told them anything they didn’t know already; namely, that the lives of gay men were considered of little to no value and certainly no great priority for protection by the US government of the time.
For Sedgwick, a paranoid project of exposure has often tended to focus on historical hidden violences, and she asserts that in the privileging and anticipation of revealing injustice, the potential and capabilities for addressing current systems of oppression and injustice in their full spectrum of hypervisibility might be inhibited or overlooked.
As a counter, Sedgwick maintained that the power of ‘reparative’ readings and practices could be found in the use of positive, enabling effects of joy and pleasure to repair the damages of homophobia or other such prejudices. Such ‘reparation’ was not proposed in place of, or in opposition to, but as one of many alternatives to the spiral of negativity reproduced by ‘paranoid reading’.
Sedgwick, in short, looked to “open a space for moving from the rather fixated question ‘Is a particular piece of knowledge true, and how can we know?’ to the further questions: What does knowledge do?” Could it be that such a move should be applied towards these recent advancements in the field of genetics?
When the pioneering Human Genome Project identified and charted the sequence of base pairs that make up human DNA in 2003, scientists widely acknowledged that though the ‘blueprint for life’ had been successfully mapped, it was only part of the way towards a full understanding of the human genome. Among the 3 billion base pairs forming each person's genetic code, only 2% represented genes that coded for proteins, giving way to the rise of theories which dismissed the apparently surplus remaining 98% as merely 'junk DNA'.
Until recently, that is. The international Encyclopedia of DNA Elements project, ENCODE, published research findings last month that not only conclusively disprove the so-called junk DNA theory, but indicate that a large percentage of the human genome, (much of which consists of genes that do not code for proteins), is significantly involved in biological activity.
In press coverage, we are told that the ENCODE findings have been likened by scientists to an operating manual for the human genome, demonstrating that important DNA interactions take place throughout the whole of the genome, with sets of control centres containing millions of ‘switches’. These ‘switches’ regulate the ways in which different cells interpret the same genetic information and each type of cell requires a different configuration, since the necessary settings may be subject to alterations over time or in response to other factors.
Fixing the Human Machine
The ENCODE discovery is one on a seismic scale because it marks a fundamental change of direction for research into the causes and cures for disease. Whereas scientists used to look towards finding possible defects in the genes themselves, the new findings indicate that a great deal of the relevant variations will be found in areas containing a ‘switch’. Dr Tim Hubbard, lead principal investigator of GENCODE at the Sanger Institute, has been quoted as describing the findings as “...essential to all those who would fix the human machine.”
After checking my own racing pulse for signs of critical paranoia and even allowing for what may be just a case of unfortunate wording, I still find this last description curiously provocative. Critical and imaginative formulations of the human body as ‘machine’ are by no means new, and have certainly proved useful in extracting meanings in terms of what it is to be human as well as in evaluating the changing limits of the body in relation to sentience, subjectivity, technology etc. But, as a modern history of the biosciences would attest to, it’s breakthrough moments in genetic research (cloning, engineering, mapping of the genome etc) that have often been those which provoke the most apparently instinctive and strongly felt responses.
In this context, it is because the idea of fixing the human machine lends itself to a constitution of the human body somewhere, out there, and yet within, as somehow temporally adrift, stretching out into future generations, and yet still prior to birth. It’s actually the word ‘fix’ that’s of most interest. Whilst the intention behind the choice may have been innocent it is nonetheless a loaded word. Stemming from the Latin verb figo, the word has a number of connotations in its transitive use alone – primarily of course it means to repair or mend, but also to put in order or in good condition, adjust or arrange, to make fast, firm, or stable, to place definitely and more or less permanently, to settle definitely, or to determine.
In less formal usage, the word ‘fix’, as a noun, can also have other ‘junky’ or ‘trashy’ connotations. It can mean a position from which it is difficult to escape, a predicament, adjustment or solution, usually of an immediate nature. In slang use it’s similarly loaded, with possible meanings of an injection of heroin or other narcotic, a compulsively sought dose or infusion of something, or in a much older usage, ‘in a fix’, could also imply being pregnant.
Fixing tends to suggest preservation, like insects pinned for display, but there’s also a sense of violence lurking in the etymology, a relationship to transfixing or piercing, or more specifically still, to driving nails – as in one of the most symbolic punishments ever acted out upon the object of the human body: crucifixion.
The body can therefore be seen as a site on which criminality, poverty, disability/illness and undesirability (as well as the punishment which historically ensued) conflate in a process of fixing. Concerns and narratives of (moral) decay and deterioration emerge that attempt to fix some bodies as unclean or ‘trashy’ in their deviance from a norm. And these must of course hinge upon the value of that norm – which is often related to productivity (genetically in terms of producing children; or financially in terms of producing money). There is, for example, a long history of the class-marked body, repeatedly configured as ‘trash’ spectacle through the projection of negative moral values attached to a lack of productivity: benefit ‘scrounging’, filthy, wasteful, ‘un-working classes’ or ‘undeserving poor’.
What is noticeable about such narratives is how strikingly comparable they are to those which surround sexuality, disability and illness. Homosexuality has been consistently marked as a threat to the ‘natural order’ of the family, as biological or evolutionary aberration, as degeneracy, perversion, weakness or disease. Although a wave of law reforms from the mid 1960s to the 1980s widely decriminalised homosexuality, the wake of the North American HIV/AIDS epidemic saw homosexuality shift into varying moral formations and redefined as a ‘diseased’ subjectivity. As late as 1981, US Centers for Disease Control and Prevention referred to the disease as GRIDS (Gay Related Immune Deficiency Syndrome) – a term which, according to cultural theorist John Nguyet Erni, served as a projection for “fantasies of morbidity/containment”, as well as fixing the perceived threat posed to ‘normal’ (heterosexual) biological reproduction.
Work to fit; fit towork
Just as homosexuality was seen by some as a threat to the health and progress of society, so today, argue theorists like Robert McRuer, the same is true of disability. In his seminal book, Crip Theory: Cultural Signs of Queerness and Disability, McRuer ties the idea of “compulsory able-bodiedness” to the rise of industrial capitalism, arguing that being able-bodied is defined in relation to productivity in a social and professional sense – an ability to do a job, to generate an income.
He cites a number of normalising stipulations that are produced by this link. 1. A standard (and working) number of limbs and digits that are used in appropriate ways (feet are not used for eating or performing other tasks besides walking; hands not used as the primary vehicle for language etc). 2. Gender-appropriate bodily features (ie aligned with one of only two possible sexes). 3. Acceptable and measurable mental functioning – behaviours that are not disruptive, unfocused or ‘addictive’ etc. From the pharmaceutical industry to psychiatry, advertisements for flu relief to the way in which cancer is reconfigured as a battle to be fought (and won), the emphasis everywhere is on being ‘fit to work’.
There are plenty of highly visible instances of how this theoretical process of definition plays itself out in the ‘real world’. Most obvious to those in the UK is the ongoing scandal of Atos Healthcare, a private firm contracted by the government to carry out fit-to-work medical assessments and, with an irony lost on very few, one of the main sponsors of the 2012 Paralympics. Accounts of assessors refusing to make contact, combined with shocking cases like those of Dr Jane Hunt (who was found capable of work despite being “flattened” by ME) and June Mitchell (who died of lung cancer shortly after scoring zero on an Atos assessment) have led these assessments to themselves be deemed ‘unfit for purpose’.
The Atos contract – worth in excess of £100 million in 2011 – has come under fire from a host of disability rights groups, charities and healthcare professionals. Campaign research group, WeAreSpartacus, for example, have published a response entitled The People’s Review of the Work Capability Assessment, which comprehensively details the experiences of over seventy claimants “who have been wrongly assessed, humiliated, badly treated and forced to go to tribunal to secure the benefits to which they are legally entitled”. In less inflammatory language comes the verdict of Professor Malcolm Harrington in his government-commissioned independent review earlier in the year: “It's still not working,” he concluded.
Gender dysphoria: definition disruption
As the Atos scandal shows, attempts to fix the body within clearly defined parameters always tend to come apart – and this is especially pronounced when issues like gender identity are examined in any detail. Particularly instructive here is the issue of gender dysphoria, the conviction of belonging to a gender different to one’s own biological sex. Gender dysphoria is currently classified as a “mental and behavioural disorder” in the World Health Organisation’s International Classification of Diseases (ICD) which serves as a global reference on physical and mental conditions. Last year, the European Parliament, backed by a whole host of trans activist support, called upon the WHO to withdraw gender identity disorders from their list of mental and behavioural disorders, to “ensure a non-pathologising reclassification in the negotiations on the 11th version of the International Classification of Diseases”.
British medical authorities appear to have gained some ground in acknowledging the complexity of trans experience – especially around issues of language and personal choice. The decision of whether or not to ‘transition’ – through hormone therapy and/or gender-reassignment surgery – is now much more of a personal choice. In the US, however, after years of campaigning by trans activists, the American Psychiatric Association recently reclassified ‘gender-identity disorder’ as ‘gender dysphoria’. But it is still considered a mental illness, in part because removing the term from the Diagnostic and Statistical Manual (DSM) would open up the question of who should finance ‘transition’ treatment. This shift in classificatory language means that many trans people are still not served by authorities who would deem them to be mentally deficient.
In this particular incidence, there are so many variables – subjectively produced or authenticated – which resist the fixed requirements of the medical classification process. Even the arguably more neutral sounding diagnostic term ‘gender dysphoria’ is nuanced with a sense of oddity, a ‘confusion’ imposed onto the subject, not only in terms of whether this confusion is of the mind or of the body, but also in an individuated sense, as distanced from the concerns of society. It’s entirely reasonable to point to the possibility that new research which privileges the influence of environmental factors in genetic composition could exacerbate the struggle for trans people to resist damaging pathologies under which many already live, by placing the subject within further classifying frameworks. And yet, importantly, this is not to say that the drive to define should simply be resisted at all costs.
Reading and Reparation
Eve Kosofsky Sedgwick expressed the reservation herself, in thinking around the affects of paranoia, that “it’s far easier to deprecate the confounding, tendentious effects of binary modes of thinking – and to expose their often stultifying perseveration – than it is to articulate or model other structures of thought”. This concession isn’t to offer complacency or naivety as an alternative response (or as an alternative to a response); but to understand that, according to a queer sensibility of the ‘reparative’, spaces can be made for responses or readings that might interject with, affirm or reintroduce subjectivity, and therefore problematise certain identifications or assumptions.
It’s worth recalling that until 1990, the ICD also classified homosexuality as a mental illness, despite the American Psychiatric Association having already declassified it earlier in the 1970s. What’s more, the catalyst for that first milestone moment was not biological confirmation or classification, such as identifying the ‘gay gene’ (the possibility of which, incidentally, troubles arguments from all perspectives); it was a victory wrought by the major cultural change demanded (and achieved) by the expression of subjective experiences of gay men and women.
The radical cultural and political potential of ‘talking back’ isn’t merely an issue of visibility, but relies on the complicated and slippery nature of self-identification to reject classifications and expectations. Queer theorist Jose Esteban Munõz describes ‘disidentification’ as a “performative mode of tactical recognition” employed in resistance to the oppressive and normalising discourse of dominant ideology, and put to powerful use in resisting the “interpellating call of ideology that fixes a subject within the state power apparatus”. Similarly, it’s the framework of shared subjectivities that make it possible for “coming out crip”, as McRuer would put it.
The adoption of such phraseology – with the mobilisation of humour and ‘bad taste’ too – is arguably a ‘queer’ strategy, and one with a rich history to enjoy: from an HIV/AIDS ‘zine called The Diseased Pariah News, published in the 1990s, to the comedian, Liz Carr, of Abnormally Funny People. The effect in each case is a disrupting of conventions around how best to approach serious topics like illness or disability, thereby potentially unblocking and expanding possible responses.
Resistance to normalising discourses through subversive reiteration applies as much to the policing of language in the name of propriety, as it does to the language of prejudice or hate speech. Interestingly, the use of the song Spasticus Autisticus in the opening ceremony for the 2012 (Atos-sponsored) Paralympics traces these sensitivities around appropriate language. Ian Dury, disabled by the polio he contracted in his earlier years, wrote the song in 1981 in protest against the United Nations International Year of Disabled Persons, something Dury thought to be patronising. The song was met with censorship, notably by the BBC, despite a lack of complaints from other disabled people at the time.
The Listening Eye?
Suspicion, distrust and all other paranoic tendencies are by no means exhausted. Now that the latest in genetic research is suggesting new approaches to the eradication of disease and bodily defect, the investment (and concurrent suspicion) around personalised medicines or pharmacogenetics (the development of drugs to work in accordance with specific genetic profiles) is of even greater salience. Professor Donna Dickenson, a leading scholar in medical ethics, has warned of the economic realities of this kind of personalised genetic medicine and genetic profiling. One of her main concerns with what she refers to as ‘me’ medicine over ‘we’ medicine is a lack of incentive for pharmaceutical companies to manufacture drugs for smaller groups of patients (or ‘customers’). This comes with the fear of exclusion from insurance cover or healthcare treatment on the grounds of genetic profile. Dickenson challenges the presentation of personal medicine as a solely progressive development, a ‘choice’ marketed to the ‘consumer’, in a time where cost-cutting has wreaked havoc on healthcare systems, suggesting that treatment will almost certainly be denied to some groups on the basis of cost.
What becomes important then is to ascertain how we might listen more astutely to expressions of cynicism, opposition or nervousness towards developments in areas of scientific knowledge, without dismissing such responses as mere ‘hysterical’, ‘reactionary’, ill-informed, or, worst of all, ‘bad science’. There is a kind of ethical imperative here, one characterised by cultural theorist Joanna Zylinska as a “listening eye” – which “does not attempt to fix the essence of being but rather 'regards', ie respects and listens to the other's story which always has to remain, to some extent, theirs”.
With the ENCODE research challenging existing knowledge about the human body, its ailments and frailties, this may be the moment for a true convergence of possibilities. A deeply felt sense of injustice or distrust is not enough, but by opening spaces for the ‘reparative’, it might help to form a starting point from which to re-examine constructions of the community, and of the individual – to reclaim them as changeable concepts, not as absolute, or fixed. Since all knowledge is situated – all views are from a viewpoint – we should be equally watchful of concealed assumptions as of explicit agendas. The task then is to recognise at all times whether it is disease that we’re setting out to ‘remedy’, or difference.