A quick blog to give links to my latest pieces on the general election 2017 for Prospect Magazine. I first looked at UKIP’s chances in Boston and Skegness:
This week, I looked at the fight for the South London seat of Vauxhall.
A quick blog to give links to my latest pieces on the general election 2017 for Prospect Magazine. I first looked at UKIP’s chances in Boston and Skegness:
This week, I looked at the fight for the South London seat of Vauxhall.
This week I was lucky enough to join Ken Titmuss, an expert in old maps who runs London walking tours, on one of his outings in Vauxhall. Ken, a former community worker, really knows his stuff, although he wears his knowledge lightly. I met Ken, along with some charming German students at the local station. He gave us copies of four old maps of the area, in covers, for us to refer back to as we walked around the area.
We circled around what was left of the Pleasure Gardens (now a well-used park, with a fine tea house at one corner). Ken explained the history of the Gardens, and then we struck out a little further, finding traces of the Royal Doulton tile factory, an old school and the former graveyard, amongst other treasures such as tucked away Georgian houses.
I was there because I wanted to get a better feel for the second third of the book I am writing at the moment, about two young girls, in Georgian times, and their precarious life in London before being transported to Australia in the 1820’s. The first third is set in Norfolk. I know the South Norfolk landscape well; I’ve walked it many times with my parents. I’ve seen the seasons come and go; I’ve heard the birds sing, and watched them out hunting. I’ve been to the great church below, in Redenhall, many times, and know its place in the landscape and in the hearts of the people about whose ancestors I am writing. I’ve swum in the slow, local river, taken boats out on it. The heft of the landscape is within me and so although I’m going back in time, some 200 years, I feel at ease with it.
Now I have to go through the same process with London, and it’s so much harder because of the multiple descriptions by other writers. I have to peel them away and find my own voice, in a landscape that has been so well conjured by others.
So having a guide who can walk you through history is useful. Ken brought Vauxhall to life, but he was also kind enough, at the end of the walk, to go with me to what remains of the Millbank Penitentiary to identify parts of the outer wall that remain.
We walked round the vast footprint of the building as it was, through social housing and around Tate Britain, which sits on its foundations. This forbidding structure would have dominated the riverside when the two girls lived in London. They were intimately acquainted with the Penitentiary, having spent some years inside it before being transferred, with marsh fever, to the hulks. Their life in the London was typical of that of poor young women – life in and out of institutions, on the streets, before they were transported. My task is to breathe life into their voices, as their lives are currently mediated and communicated by those who disparage them. It’s about raising the dead from paper, and hearing them speak back, in the landscapes that formed them.
Oh, and if you want to join Ken on one of his excellent walks, he can be contacted through his website on on Twitter @oldmapman.
Below is the text of the letter we have sent today to the Attorney General, asking if he will review the sentences against those who attacked Lee Irving, under the Unduly Lenient Sentence scheme.
We hope pressure from the family, the network and others will bring about a review of the sentence. We campaigned some years ago to make sure that disability related murders could be sentenced as a matter of parity with other murders that could be seen as hate crimes (for instance, homophobic or race related murders). This would mean that the life sentence can be increased up to 30 years for such crimes. We achieved this end with an amendment to the Legal Aid, Sentencing and Punishment of Offenders Act, thanks to all party pressure. However it is not being used in disabilty related murders – the sentences have remained relatively low for such horrific crimes. So should there be a new law? Or can the provisions in place bring about change?
My feeling is now that the current provisions do not go far enough and are not fit for purpose if, as in the case of Lee Irving, the police and CPS regarded the crimes against him as related to his disability but the judge could decide that was not the case and sentence (relatively) low. If the provision was for a clear issue – disability related murder – the jury would decide, rather than the judge. This may be a useful reform. It’s certainly worth discussing at least.
LETTER TO THE ATTORNEY GENERAL BELOW, ON BEHALF OF THE DISABILITY HATE CRIME NETWORK AND LEE IRVING’S FAMILY
Here’s the next in a series of oral memories from friends, family and neighbours. This time the theme is Christmas. I asked everyone for a vivid memory from any Christmas they remembered.
My mum talked about Christmas as a child in war-time Belgrade, where she was born and lived till she was nine. My dad talked about having a spot of bother in Bethlehem one year. There’s my daughter, Josie, pin-pointing what is important for her about Christmas..and many more from neighbours in Finsbury Park, north London, with memories of growing up in Cork, Edgbaston, Staffordshire and further afield too.
Here are the memories, in Soundcloud, for you to dip in to and enjoy, and Happy Christmas and a peaceful New Year, to one and all.
Blood of the Oak is the fourth in the so-called Bone Rattler historical series, setting a Scottish protagonist, physician Duncan McCallum, centre stage during the early days of America settlement. He is known among the native peoples as a Death Speaker – someone who can read corpses and find out the truth about what happened to them. As such, he becomes a de facto detective in this excellent historical mystery.
Set in 1765, Pattison uses the Stamp Tax dissent, arguably marking the beginning of organised resistance to English colonial rule, as the backdrop to this tensely crafted tale. McCallum starts to track a series of ritualistic murders, connected both to the theft of an Iroquois artifact, known as the Blooddancer, and to a series of horrific murders and kidnappings. These are of the network of underground runners, who are, for their part, starting to put together the beginning of organised struggle against colonial rule. McCallum starts to journey south from Pennsylvania, to uncover the truth and track the Blooddancer and the murders that seem to have occurred in its wake. He is enslaved in Virginia, on a tobacco plantation, when captured, alongside other runners. There he starts to put the story together, and why he, and others, are suffering: behind the killings stands a conspiracy of highly placed Englishmen, who want things to stay as they are.
The centre part of the book is set on the plantation, and at this point key characters move in and out of focus. This is useful (one could argue key) for both exposition of history and also to establish the wide range of peoples contesting power at this critical historical juncture. However, the pace slows down during the part, though that may be justified, given the power of the writing at this point. The cruelty of slavery which, as Pattison demonstrates, is clearly related to torture – emotional and physical – is portrayed unflinchingly. “The days became a blur of pain and toil. The crack of a cane and the bray of “sotweed!” grew as constant as the drone of flies. At night men collapsed onto the sleeping racks but in the small hours Duncan often heard them talking in their sleep to loved ones they might never see again. Friends whispered to each other of simple things, like picking apples with a son or kittens delivered on a hearth on a snowy night. Duncan, lying on his pallet in the dark, found himself spending more and more time thinking of Edentown, and the contentment he had known in the years since the war.”
The book speeds up again, in the last part, when McCallum decides to escape and to turn the intrigue of the Englishmen against them.
Pattison weaves real historical characters deftly into the novel, including Benjamin Franklin, early rebels and even Washington himself, in a cameo role. However, Pattison’s favoured viewpoint is from bottom up – with the voices of new settlers, Native Americans, black slaves and others speaking eloquently of how American was made, and who sacrificed most in that bitter struggle. A lost world is glimpsed, in beautiful writing about the bond between nature and people, showing how harmonious that world could be. Sadly, it is captured just at the moment of its disappearance; similarly to his Tibet series, Pattison wants to reclaim the voices and experiences of peoples whose lives have been destroyed by colonial rule – whether that be English or Chinese powers. What Pattison does best is allow the voiceless to speak, whether they are women, or people from ethnic groups whose rights have been trampled upon in the quest for territory, wealth, dominion. Here is a sense of the iniquitous pecking order on the plantation, in McCallum’s voice:“We are chattels of the estate,” Duncan replied. “If you were to rank the population of this plantation, there would be the unseen owner, then the aristocrats of the manor and the superintendent, after that there is the house staff, the field overseers, the Africans, the horses, the pigs, and finally those of us who inhabit this stable.”
As he says himself, in an author Q&A, all too often history, as it is taught in schools, is bloodless and pale, compared to the lives of real people at any moment, who burned with the same passions as we have today. Pattison’s take is to bring history to life, through the medium of accurately researched historical fiction. As a writer embarking on her first historical novel, I can feel the research in this book, and how it has been weighted to work in a fictional form. This poignant book is also beautifully told, in nuanced language that fits well to the period. It is well paced and reminds us, rightly, of the cruelty of colonial rule and of many of the first settlers.
I hope that Pattison’s character, Jaho, is right, when he talks of freedom on the plantation to McCallum:
“Freedom? Here is where you learn about freedom, McCallum. The only real chains you wear are those you put on yourself.”
Acknowledgment: I was sent a copy of Blood of the Oak for review by Julia Drake Public Relations.
I recently delivered a speech at Nottingham Festival of Literature on this interesting subject – how disabled people are represented in literature. The speech is in four parts, and I’ve also embedded links to the speech, which I then recorded later, on my Soundcloud account, where you can have a listen here by clicking on the Soundcloud link.
A quick run-down here:
First of all, I looked at representation of disabled people in classical times. I then moved on to look at representation in medieval times and up until today (yes, a whistlestop tour!) I also looked at the theories of representation, before moving on to where we are now. I examined identity politics, about which I have some reservations, and I looked at the current theme of cultural appropriation, and how it links to disability representation. I want to see disabled writers venture forth from the haven of the first person account, and write more sci-fi, historical fiction, thrillers and so on, not just criticise what non-disabled writers have to say. As the writer, James Baldwin says: ‘My position, though, is that I will not tell another writer what to write. If you don’t like their alternative, write yours.’ Read his full interview, here, in the Paris Review, it’s a wide-ranging and thought-provoking read, and I agree with much of what he says.
My speech is available below as a transcript as well. In it, I draw on research I conducted on literature, art and representation for my first book, Scapegoat: why we are failing disabled people. It’s still in print, folks, if you want to buy it.
SPEECH FOR NOTTINGHAM FESTIVAL OF LITERATURE, 11 NOVEMBER, 2016
A message from over the wall
Thanks very much for inviting me to talk about the theme of disability and literature. It’s a pleasure to be in Nottingham for this wonderful festival.
This is a wide-ranging subject, about which a lot of ink has been spilt. I looked at it, myself, in my own book, Scapegoat, published five years ago and will draw on some of that research tonight. However, I want to broaden out from good and bad representation, and the inevitble book lists (although examples are important), and set the whole debate in a wider context. I also want to talk both more personally and politically tonight – about the importance of good writing, about genre and about who represents whom, and on what basis. The disability scholar, Hugh Gregory Gallagher said, of the “land of the ‘crippled”, (his words) that “a great wall surrounds this place, and most of what goes within this wall is unknown to those outside it. What follows is a message from over the wall.” Our task, as writers, is to explore unknown worlds; take walls down; create understanding. In this context, I believe that means that writing about disability should be invested with universal meaning, so that we can look for what we have in common with each other and critiquing it should follow the same lines too.
I’m going to talk for about three-quarters of an hour, and then we are going to take some questions and have a discussion. I will look at historical representation first, then move on to the disability movement and its critiques of mainstream literature. I will discuss some texts that I think are interesting, discuss the vexed question of cultural appropriation and, of course, the uses of #criplit.
First of all, I wanted to give a sense of how my own interest in disability affairs and in representation.
When I was about thirteen, I woke one night, about midnight, with a terrible pain in my head. It crushed me, dazzled me and left me almost unable to function. I remember stumbling down to the dark kitchen and wandering around, wondering what was wrong with me. At some point I must have got myself back to bed, and back to sleep. My mother told me later that I had written a farewell note, saying that I was dying, and that I wanted the family to know how much I loved them.
Although I didn’t realise till later, I had just experienced my first acute migraine attack. I treated subsequent ones, without a diagnosis, in a slapdash manner until they worsened quite dramatically and I was diagnosed with chronic migraines – a neurological disorder – some years ago. Mine is not the only experience of disability or impairment in the family. My grandfather was deaf, after a childhood illness; my great uncle, Henri, was a blind war veteran in France. Other family members have Aspergers. Others, towards the end of their lives, have experienced dementia. A close relative had a traumatic brain injury some years ago. Seeing attitudes towards that last relative change, after disability, informed the writing of my book, Scapegoat, which examines violence towards disabled people and the culture within it sits.
That brings me nicely on to the next part of my talk – a brief cultural history of the representation of disability. I wanted to run through some of the powerful, cultural archetypes that still engulf the lives of disabled people today, right back to classical times, where attitudes were formed that still linger today, both in representation and in reality.
One of the most powerful archetype is that of the scapegoat. When a crisis or disaster struck a Greek city, bringing down the ire of the Gods upon the mortals, the citizens would select an offering to appease their wrath. The scapegoat – or pharmakos, in Ancient Greek, would sometimes be expelled forever from the city state, sometimes even sacrificed. All too often the offering, that cleansed and purified the nation, was a “useless” person or an “outcast”. Some one “mistreated by nature” was often targeted too, it seems. All these words suggest that disabled people were all too often selected as a perfect candidate for scapegoating. The finest and most respected of Greece’s ancient moral philosophers also agreed that only the fit should survive. In Sparta, according to Plutarch, in his account of the founder of the state, Lykourgos, written in the 1st or 2nd Century AD, it was a legal requirement of citizenship that all children should be examined. “Whenever a child was born, it was taken to a council of elders for examination. If the baby was in any way defective, the elders dropped it into a chasm. Such a child, in the opinion of the Spartans, should not be permitted to live.”  It was a grim end indeed, it seems. Plutarch wrote that “ill born or misshapen children are sent to the place called Apothetae, a ravine at the Mount Taygetus.” In Book Five of Plato’s Republic, Socrates muses, “The offspring of the inferior, and any of the other sort who are born defective, they will properly dispose of in secret, so that no one will know what has become of them.” Aristotle agrees, saying in The Politics: “as to exposing or reading the children born, let there be a law that no deformed child shall be reared.”  What nobody knows for sure is whether these edicts were Utopian or were actually enacted (the scholar, Rosemary Garland Thomson, contends that few were actually killed).
However widespread the truth of the practice might be, those who led the moral thinking of the Greeks had but one exhortation – cleanse the state of disability. Two of the most famous Greek depictions of Paradise, Plato’s Republic and the Utopis of Diodorus, were places where disability was banished. Plato not only said that disabled babies must be killed, but that disabled priests were strictly forbidden. In Utopis, anyone acquiring a disability was instructed to kill themselves.
Disability was, as it is too often today, seen as shameful. Even the God Hephaestus was banished from heaven because of his impairment. His mother, Hera, in the Homeric Hymn to the Pythian Apollo, says: “my son Hephaestes, whom I bare was weakly among all the blessed gods and shrivelled of foot, a shame and a disgrace to me in heaven, whom I myself took in my hands and cast out so that he fell in the great sea.” Hephaestus, in The Odyssey, internalises this hatred: “Aphrodite, daughter of Zeus, scorns me for that I am lame, and loves destructive Ares because he is comely and strong of limb, whereas I was born misshapen.” He bewails his very birth: “for this is none other to blame but my two parents – would they had never begotten me.” Indeed, Aphrodite took a non-disabled lover, to compensate for her husband being a “cripple” – and therefore thought of, even today, as impotent and unmanned.
Disability is also connected with evil – a prejudice that gains even more power in the Medieval Ages and beyond, in the time of the witch-hunts. Hephaestus is often represented with one leg shortened to denote his lameness; and throughout the Middle Ages it was popularly believed that his cloven hoof was the one feature, which the devil was unable to disguise.
However, lameness acquired, or limbs lost, in battle was accepted, up to a point – a first sign, perhaps, of what we now call the ‘hierarchy of impairment’. Indeed, men with a variety of physical impairments participated in the military. Artemon, in Plutarch’s Pericles, was very lame. “Ephorus says that Pericles actually employed siege-engines, in his admiration of their novelty, and that Artemon the engineer was with him there, who, since he was lame, and so had to be brought on a stretcher to the works which demanded his instant attention, was dubbed Periphoretus.” That said, some disabled soldiers were taunted. In The Iliad, the soldier Thersites is mocked for being lame, a hunchback and ugly, although he was not excluded from the army.
Disability is also a stigma – as it can be today, although some conditions are less stigmatized than others, with mental health and learning difficulties carrying, arguably, most stigma. As the sociologist, Erving Goffman writes in Stigma: Notes on the management of spoiled identity, the Greeks coined the term stigma to refer to bodily signs designed to expose something unusual and bad about the moral status of the signifier. The signs were cut or burnt into the body and advertised that the bearer was a slave, a criminal or a traitor – a blemished person, ritually polluted, to be avoided, especially in public places.” He argues that there are three different types of stigma. One is that of disability – what he calls the “abomination” of the body, when it is deformed. Then there is the blemish of individual character. And, thirdly, there are the “tribal stigma” of face, national and religion.
As the Roman Empire gained territory, and the Greek Empire fell, one legacy remained: hostile attitudes towards disability. The Romans, indeed, extended the abuse of both disabled children and adults, in their open enjoyment of “freakery” and spectacle. They, too, discriminated against disability from birth. According to Dionysius of Halicarnassus, Romulus, the founder of Rome, demanded that “all the city’s residents should raise all their male children and the first born of the girls and not kill any child under three unless the child was deformed or monstrous in which case it was to put to death immediately after birth.” The mother had little or no say in the fate of her children. It was the father, or patria, who determined whether the child should live or die. The Twelve Tables of Roman Law dictated that the deformed child should die, after being shown to five neighbours.
The scapegoat crops up again too, with the scholar, Carlin A Barton noting that “the monster, and especially his avatar, the grotesque stupidus, ranked among the principal and most effective sacrificial decoys and scapegoats required to preserve the ‘roman’. They were the recipients of many of the blows aimed at deformity…Embodiments of chaos and representatives of the society, the stupidi, were types of the scapegoat.” But it was perhaps in their fascination with the “freakshow”, the spectacle, that the Romans can be seen to have passed their ideas about disability down to the Victorians and beyond. As Cicero writes: “in deformity and disfigurement there is good material for making jokes.” The monsters – disabled people – were seen as wonderful spectacles. Dwarfs, hunchbacks and fools were all in demand as entertainers (singers, clowns, jugglers to name but a few). Indeed, Plutarch and Longinus note that children were even deliberately deformed by being bound and confined in boxes so that they could be sold at the “terator agora”, or “monster market”. As in Victorian times human deformity became a marvel of the natural world, and disabled people collector’s items. Pliny recalls in his catalogue of human wonders, Natural History, (7.74-75), the giant Gabbara, brought in the age of Claudius, and the dwarf Cinopas, kept by the granddaughter of Augustus, Julia, as a pet. He writes: ““the tallest person seen in our age was a man called Gabbara…just under ten feet tall…the smallest man was Cinopas, just about two half feet tall.”
The Romans, too, saw disability as a stigma – as something that might make the disabled people powerless in themselves, but powerful in that they could pass on their sin to others. The disabled person was not only seen as struck down by God, but, in some ways as being able to pass his or her sin on to others. Pliny writes in his Natural History: “We spit on epileptics in a fit, that is, we throw back contagion. In a similar way we ward off witchcraft and bad luck which follows meeting a person lame in the right leg.” In many cultures this remains true today. The “hunchback”, for instance, is both hated and feared – in many Mediterranean cultures they are still seen as the manifestation of sin, and also able to curse. Even the disabled Emperor Claudius, who escaped death at birth only because he was from the highest echelons of Roman society, was subject to abuse from both the Roman nobility and Roman Guards prior to taking the imperial throne because of his impairment, now thought to be cerebral palsy and resulting mobility impairments. Even his mother, Antonia, treated him with contempt and referred to him as “a monster of a man, not finished by nature and only half done’”
However, in Egypt and Mesopotamia, other ancient cultures, there is a far more generous attitude towards disability. In one ancient Eygptian text, the Instruction of Amenemope, it states:
“Do not laugh at a blind man
Nor tease a dwarf
Nor cause hardship for the lame.
Don’t tease a man who is in the hand of the God
Nor be angry with him for his failings.
Another ancient myth, that of Enki and Ninmah, in Mesoptomaia, describes the creation of humanity in a “playful tale” which celebrates and explains the origin of “normal” and “abnormal” human forms. It was only when the Egyptians feared genetic contamination that they enforced normalcy, in the words of Lennard Davis. Some texts suggest burying children with a condition that is similar to Huntingdon’s. But it was not a common fate for disabled children. Unfortunately, however, the civilisations of Greece and Rome have influenced our culture more than those from Eygpt and Mesopotamia. Our legacy from those times is one rich in contempt for disabled people. Sinner, slave, scapegoat, stigma and spectacle – a human without humanity, who should be banished from sight and segregated permanently – these images of disabled people and attitudes towards them, are hardwired into our culture.
END OF PART ONE
Bringing the story to England, one can see a hardening of attitudes towards disability reflected in medieval literature and art and later. In Shakespeare’s Richard III, written in the late sixteenth century, the King is portrayed as twisted in both body and mind (of course it now appears he was neither) – as he says of himself, “rudely stamp’d”. Like Hephaestes before him, he is rendered impotent by his physical limitations – an impairment which also renders him villainous. As he says: “Then since the heavens have shaped my body so, let hell make crooked my mind to answer it.” Shakespeare, of course, wasn’t out of line here – disabled people were depicted as either villainous or amusing at this time. The disability scholar, Colin Barnes, points out that analysis of the joke books of Tudor and Stuart England show the extent of this practice. Besides references to the other mainstays of `popular’ humour such as foreigners, women, and the clergy, every impairment `from idiocy to insanity” was mocked. Across Europe fools were collected and exhibited by world-weary aristocrats, particularly in Germany. This interest was reflected in art too. Diego Velasquez, in particular, painted disabled people, his two most famous depictions being the Dwarf DeMorra, and the Idiot of Coria. But it wasn’t just aristocrats who were interested. As Miles reports, in his paper Martin Luther and Childhood Disability in 16th Century Germany, : “The public at large paid to see ‘monsters’ exhibited, as for example the conjoined twins recorded at Florence in 1507, without insisting that they be done away with as devilish beings.” Children and adults with physical abnormalities, Colin Barnes writes, were often put on display at village fairs. Folly literature was also popular in the sixteenth century, The best-selling book, The Ship of Fools, by Sebastian Brant, an allegory of a boat with a population of fools, was first published in 1494. Nearly 80 editions, Midelfort says, were published up until 1787. Midlefort says of this influential text: “Brant radically simplified the understanding of folly so that it became a shorthand term for his conception of sin”. As the Medieval Ages progressed, Midelfort concludes that fools were “essentially outsiders, to be beaten, manipulated, coddled and laughed at.”
The Medieval Ages and the Reformation, largely, were harsh times for disabled people, in which they were feared, mocked and even killed – just because of who they were. They were sinners, they carried a stigma, and they were seen as fit to be mocked as freaks – just like too many today. But things didn’t improve much as we moved into Georgian and then Victorian times. A new set of Poor Laws was introduced in 1834, followed by an expanded building programme – for both “lunatics” and “idiots”. The decision to confine came from the political elite. Although the 1840’s saw the advent of non-restraint, in some asylums, the system as a whole remained largely unregulated and sinister. In 1844 Parliament published the Lunacy Report, with Lord Ashley apparently “startling” the Home Secretary with his assertion that there were 12,000 pauper lunatics roaming the streets, many of them, in his view, “absolutely dangerous”. In 1886 the Idiots Act was passed. By this time a link had been established between “feeblemindedness and degeneracy, a link that lingers today. An Italian criminologist, Lombroso, said that social “atavism” correlated with physical abnormality. Whilst some poets, like Wordsworth, in his poem The Idiot Boy, departed from negative views, and urged compassion, the social and political elites stamped down on disabled people.
Literature, in the main, reflected these harsh attitudes towards disabled people – with writers like Charlotte Bronte painting a completely unsympathetic picture of the “madwoman in the attic”, Bertha Mason, Rochester’s wife, in Jane Eyre, in 1847. (Ironically, she dedicated the book to Thackeray – little knowing that he had confined his own wife, Isabella, in an asylum for insanity. She had severe post-natal depression after the birth of their third child.) Interestingly, Rochester, who is blinded in the fire, is depicted with more sympathy, although his dependence on Jane, after the fire, is stressed. Miss Havisham, in Great Expectations, by Charles Dickens, who was jilted at the altar and is clearly depicted as having mental health problems, is also depicted unsympathetically. Dickens, however, with his keen eye, wrote sympathetically about some forms of disabiblity. Tiny Tim, of course, is a controversial figure – but few could argue that Dicken’s intention was to set a disabled or sick person at the very heart of one loving family. We’ll come back to how best to analyse disabled characters in historical texts later.
Being sent to the workhouse or the asylum was, understandably, something that some disabled people fought hard to avoid. One choice for disabled people was to become a figure in a freakshow. Freakshows had been popular since Tudor Times, but the Victorians became interested to the point of obsession, with one Punch cartoon in 1847 satirising what it called “deformito-mania”. Indeed, some had a choice, if they could support themselves – most eloquently represented in the story of Joseph Merrick, who was immortalised as the Elephant Man because of a condition in which growths of skin, resembling an elephant’s skin, appeared on different parts of his body. Like a number of other Victorian people with disabilities, particularly those who had gigantism, or dwarfism, he chose to be exhibited in a freakshow, rather than be confined to a workhouse. The surgeon, Sir Frederick Treves, realised later how wrong he was to dehumanise Joseph Merrick. In his Reminiscences, he wrote: “I supposed that Merrick was imbecile and had been imbecile from birth…The fact he could appreciate his condition was unthinkable… I came to know that Merrick was highly intelligent, that he possessed an acute sensibility and – worse of all – a romantic imagination… I realised the overwhelming tragedy of his life.”
Merrick was more than aware of his humanity. Indeed, he ended his autobiography with a poem, which he adapted from the poem, ‘False Greatness’, by Isaac Watts:
T’is true my form is something odd
But blaming me is blaming God
Could I create myself anew
I would not fail in pleasing you
Was I so tall, could reach the pole
Or grasp the ocean with a span
I would be measured by the soul
The mind’s the standard of the man.
What happened to Joseph Merrick was part of a wider fascination in the 19th century with feral children, after a number of children were found living wild in the woods, the most famous being Victor, the Wild Boy of Aveyron, who was discovered in 1800. The philosopher, Jean-Jacques Rousseau, developed his notion of the “noble savage” from the national discussion of such cases in France, and further afield, about what constituted a human being. Disabled people were seen, like feral children, as being between the beast and the human and depicted as such.
At this point we turn to eugenics, which has Greek roots, meaning “noble in hereditry” and was first used by the British scientist Francis Galton (a cousin of Darwin), in around 1883. (I think, of all the prejudices, this one, relating to hereditry and the right to life, has been the longest lasting and remains fought over today.) Galton and his wife both had mental health conditions, and his sister curvature of the spine. Perhaps it was this background that inspired his research into eugenics (and, indeed, the couple never had children). His research, in turn, inspired social radicals such as HG Wells, and other Fabian luminaries, but was also embraced by Ottoline Morrell. Galton, along with HG Wells, became more and more interested in “negative eugenics” – preventing or restricting recessive genes from reproduction by restricting the rights and opportunities of disabled people to “breed”. The movement started in the UK and spread rapidly to the United States where it was embraced with eagerness. British and American political activists, philosophers, writers and scientists, from all sides of the political divide, to a large extent, inspired the attitudes towards disabled people that underpinned their wide-scale slaughter during the Holocaust.
There was some pity for soldiers in the First World War, with soldier-poets, like Siegfried Sassoon and Wilfred Owen, who documented in pitiless verse the cruelty of shell-shock (and the viciousness of the response by the British army). Indeed Sassoon’s poem, Survivors, written when he was recovering in one such hospital, Craiglockhart, in 1917, bears compassionate testimony to the mental distress suffered by so many soldiers.
“No doubt they’ll soon get well; the shock and strain
Have caused their stammering, disconnected talk.
Of course they’re “longing to go out again,”–
These boys with old, scared faces, learning to walk,
They’ll soon forget their haunted nights; their cowed
Subjection to the ghosts of friends who died,–
Their dreams that drip with murder; and they’ll be proud
Of glorious war that shatter’d all their pride …
Men who went out to battle, grim and glad;
Children, with eyes that hate you, broken and mad.”
But reform of services was slow and patchy and certainly did not affect how those with learning difficulties, and so-called pauper lunatics, were treated. A few dissenting voices, among them, scientists and writers, protested. Lower social classes, Julian Huxley, said, had not produced more geniuses not because of innate deficiency, but because they were condemned by lack of opportunities to be ‘mute and inglorious….vast reservoirs of innate intelligence untrained in children from the lower social strata.” Writers, particularly James Joyce and GK Chesterton, also protested. Chesterton wrote that it was appalling to turn “common decency” – such as being married to an “invalid” into a “social crime”, in his passionate polemic, Eugenics and Other Evils, published in 1922. He said, in the introduction: “Eugenics itself is a thing no more to be bargained about than poisoning.” But eugenics, and its legacy, poisoned the air, nationally and internationally, for many years not least in the United States and Nazi Germany.
There, of course, an estimated quarter of a million disabled children and adults were murdered, in the T4 action during the Second World War. A key strand of the softening up of the population for this campaign was through film and posters, stressing the cost of disability. One example, from a sequence in a Reich propaganda ministry film, shows disabled people lying in cot beds, with the strap line: “Life only is a burden”. As Hugh Gregory Gallagher demonstrated in his masterful book on the T4 programme, By Trust Betrayed, the killing machine was well prepared and once it started, orderly in the extreme.
Post war, things shifted. By the end of the 1960’s putting disabled people away in institutions was finally challenged, and by the 1980’s most, but not all, long stay institutions were closed, leading to what was called ‘care in the community’. Erving Goffman’s work in the United States, chimed with UK research, finding that institutionalisation was harmful for both adults and children – calling them “storage dumps” that should be closed. He observed, in his introduction, that what he called “total institutions” were incompatible with family life (hence the ritual exclusion noted by observers), and that being incarcerated in a “mental institution”, as he called them at the time, was effectively a prison for people who “have broken no laws”. He concluded, rightly, that “many total institutions, most of the time, seem to function merely as storage dumps for inmates”. His words resonate, and remain true, today.
So that brings us up to now, after a whistle-stop tour of representation and disability. It brings us up to the beginning of the disability rights movement and the current question – where now for literature and representation of disability? Of course, there is no one correct way in which mainstream literature and its characterisations of disabled people should be treated. As I hope I’ve shown, it’s not as if images of disability have been absent. The question is how to frame discussion of them in classic mainstream literature, how to question representation today and and how to create new images.
Different approaches towards representation have been analysed by David T. Mitchell and Sharon L. Snyder, “Representation and its Discontents: The Uneasy Home of Disability in Literature and Film” from The Handbook of Disability Studies. In it, they look at how disability studies methodology has changed, from an original analysis of negative imagery of disability, to more contemporary approaches on representation. The first focus of the disability movement, they say, and I agree, was for scholars to show how disability in literature represented what they call “a restrictive pattern of characterization” that mainly framed them as antagonists or villains. This analysis, in essence, viewed all literary and artistic representation as distorting. Their criticism of this approach is valid, I think – that “by depicting disability as an isolated and individual affair, storytellers artificially extracted the experience of disability from its necessary social contexts”. Disability studies then developed a more social realist approach, with scholars looking for more realistic images that could balance this negative history – not romantic images, but ones which demonstrated the struggle of disabled people, through the ages, to live ordinary lives, against negative cultural views. But, they go on to say, that approach was ahistoric, and disregarded ideology of the day – take, for example, literature in the time of eugenics. That context is key. More recently, the new historicists have turned their attention to looking at historical disability representation as tools for working through the ‘problem’ of difference – how best to understand an evolving understanding of disability, through representation. One key part of historical revisionism has been to look at the works of artists and writers who were disabled or had family or other close experience of disability. Mitchell and Snyder say: “this scholarly work seeks out the inevitable impact of disability on the creator’s worldview”. Now this is interesting work, and produces many lists of disabled artists and those allied to them. But, however, it reduces disabled artists and writers down to the sum of their parts – that they see and write everything they do through the prism of disability, which becomes their primary identity. So while I am pleased that disability scholars have reclaimed disabled creators from literature. – Socrates and Aesop, John Milton, Samuel Johnson, Katherine Mansfield, Virginia Woolf, Robert Louis Stevenson and Marcel Proust, it only takes us so far. It is important because it counters the notion that representation of disability have always been produced by non-disabled authors and it also builds up a canon of literature produced by disabled people. But its reductionism is troubling. Mitchell and Snyder conclude that, across all approaches to studying disability, one reality remains consistent: “representation inevitably spawns discontent”. But that discontentment can be useful, of course. It starts discussion and it motivates people to create new representations.
And that last point brings us to the issue of creating new disability identities. We have arrived at a cultural moment where identity politics are seen as key in the creative industries. I myself tick a number of ‘identity’ boxes – I’m adopted, my birth father was Iranian, my adoptive mother a refugee from the former Yugoslavia. However, as I’m going to argue in this next section, identity politics only take us so far. Professor Tom Shakespeare writes eloquently about this in his updated version of Disability Rights and Wrongs Revisited. He locates himself within the Nordic relational model of disability scholarship, where disability is seen as ‘a complex interaction of factors’, and where we are disabled ‘by society and their bodies’. He argues, and to some extent I agree with him, that ‘identity politics may cause more problems than it solves’. If, as he argues, the goal of disability studies should be to create more inclusive societies, where does that leave representation and our critiques of it?
We are at a kind of crossroads now. On the one hand we have mainstream literature and other forms of cultural representation, in which there seem to be increasing numbers of key disabled characters. Writers without a disability are sometimes ‘allowed’ to do so (I will come on to JK Rowling in a minute). Others are criticised – most recently, JJ Moyes and her book (and film), Me Before You.
On the other hand we have the emerging phenomenon of ‘criplit’, a movement which is loosely defined as encouraging more disabled people to write about themselves and for the community, as well as developing a set of guidelines for non disabled writers and creators – done with the mantra in mind, of ‘nothing about us, without us’. The movement is, essentially, part of a greater move against ‘cultural appropriation’. This is loosely defined as taking something that does not belong to your heritage and using it. In some contexts, that is a very important battle. What we are looking at here is whether it should apply, and to what extent, when it comes to literature.
Most famously, the novelist Lionel Shriver gave an address on this subject in at the Brisbane Writers Festival in September this year. She makes a spirited defence of the right of writers to be magpies, characterising the vocation as ‘prying, voyeuristic…presumptous’. The endpoint, she said, was that if we kept out of writing about ‘experience that doesn’t belong to us’ we would have no fiction. I think she made some crucially important points, although I don’t agree with everything she said. When push comes to shove my primary identity is this: I am a writer, and I believe in the right to self-expression. I believe that we who feel that we belong to certain communities must challenge our ‘policing of boundaries’ around those communities and representation of them. I believe we are bigger than the sum of our parts, for one thing. We are looking for the universal in our work – what binds us, rather than what separate us. As Tom Shakespeare says, “many disabled people will prefer to seek what they have in common with non-disabled people, promoting inclusion and equal status, not separatism. The goal of disability politics should be to make impairment and disability irrelevant wherever possible, not to seek out and celebrate a separatist notion of disability pride based on an ethnic conception of disability identity.” I agree.
But there’s another, deeper, reason. The scholar, Robert McRuer has analysed both disability and queer theory particularly well, arguing that heterosexual identity is elusive – and that able-bodied identity, too, is an “inevitable impossibility”. He observes that everyone is ‘virtually disabled’, in the sense that able-bodied status is always temporary, disability being the one identity category that all people will embody if they live long enough. He makes a key point – that disabled scholars are working towards a “new public sphere in which full participation is not contingent on an able body’, and who could argue with that. However, the statistics speak for themselves: some 17% of disabled people are born with an impairment. Everyone else – that’s 83% of disabled people – acquire a disability, many during their working lives. Surely that means that representation cannot be confined to those who are currently disabled? We will come back to this point later.
On a personal level, as I said earlier, migraines have affected my life, and those around me. Many writers are affected by them.
For Hilary Mantel, as a child, migraine “charged [the air] with invisible presences and the echoes of strangers’ voices; it gave me morbid visions.” She writes: Sometimes the aura takes more trying forms. I will go deaf. The words I try to write end up as other words. I will suffer strange dreams, from which I wake with hallucinations of taste. …. A tune will lodge in my head like a tic, and bring the words tripping in with it. … It’s a familiar complaint, to have tune you can’t get out of your head. But for most people the tunes aren’t the prelude to a day of hearty vomiting.’
The poet, Emily Dickinson, wrote a brilliant description of a migraine:
I felt a Funeral, in my Brain, and Mourners to and fro Kept treading – treading – till it seemed that Sense was breaking through – And when they all were seated, A Service, like a Drum – Kept beating – beating – till I thought My Mind was going numb – And then I heard them lift a Box And creak across my Soul With those same Boots of lead again, Then Space began to toll, As all the Heavens were a Bell, and being, but an Ear, and I, and Silence, some strange Race Wrecked, solitary here’
But whilst they have both written movingly about our common neurological disorder, they have also written brilliantly about other human experience too, which does not ‘belong’ to them, if we cleave to a narrow identity politics view of representation. Disability gives us a great jumping off point to write about pain – part of the universal human experience. This universalising of our experience starts to pull that wall between the well and the sick down, brick by brick. As a brief aside here, the writer, Susan Sontag wrote two books that looked at language and illness – Illness as Metaphor and, later, Aids and Its Metaphors. She critiqued the use of particular language, particularly military metaphors, used for particular diseases – we still talk, of course, of ‘fighting’ cancer, for instance. Whilst I agree with her that certain analogies stigmatise people with particular conditions, I think that metaphor that universalises experiences can be useful, rather than unhelpful, if used with consciousness.
So how do we universalise our experiences? Here’s one example. Migraines are a great pointer to out of body experiences of all sorts. Here’s Lewis Carrol, in Alice in Wonderland, employing his experience of migraines to describe Alice’s hallucinations.
But “‘Who in the world am I?’ Ah, that’s the great puzzle!” says Lewis Carroll’s Alice after experiencing a sudden, disorienting growth spurt. He has used his experience to write about another experience that has similarities. That’s one way.
So, moving on from that, who has the right to write about disability? Well, in my experience, my migraines could be well written about by many people around me, not just me – family members, the neurologist, a keen observer. Good writing about anything should aim to heighten understanding. That may be done by varying the viewpoint. Picture a film director, trying to capture an experience in a sequence. She will vary her shots – the tight, the wide, the pull focus, the tilt up, or the tilt down. If we keep the camera in one setting, in tight, on the individual experience, it can work, and work well. However, varying the viewpoint can heighten ones understanding of the central experience. We exist in relation to other people. Being able to write only about our own experience is, in my view, a cul de sac. It reduces the richness of the literary genre in which disabled people can write in first person only. I think disabled writers have far much more to say than that (as do non-disabled writers, of course).
So I’m saying that, far from restricting what disabled people can write about to the first person, I would argue the opposite – write more, write boldly. Don’t stop critiquing work that you don’t like, of course. Writing about disability has gained – and will continue to gain – if disabled people are involved. That goes without saying. But I do think that this debate has got caught up in the tangles of genre and we need to untangle it to work out what it is we are trying to do and say. . Disabled actors have been arguing for some time now that we need more inclusion in the film industry and that, in the main, disabled people should play more roles related to disability. I agree, and I also welcome the increase of disabled role models in TV, pushed, in particular, by ITV and Channel 4. I also think that it is important to consult – or even co-produce – research reports and even non-fiction – bearing in mind the mantra, ‘nothing about us, without us’.
But literature is about the imagination and as such requires, in almost all cases, an incursion into different voices, different lives that come together in a book and go on a journey. It’s about crisis, obstacles and, importantly, character driving the plot. Now of course disability shouldn’t be used as a lazy metaphor, or as a plot device. But, equally, I would be upset if disabled humans were not represented in literature because non-disabled writers felt the experience of impairment was off limits. The test should be, is the character well drawn? Is it written well?
So with that thought in mind, I wanted to turn to JK Rowling’s treatment of disability/disabilities in her detective novel series:
In Cormoran Strike, her detective, she puts an amputee war veteran, from the Afghanistan conflict, centre stage. His difficulty in running, his limp and his intermittent pain from his prosthesis are woven into the plots of her three books. I think her character works well and although I’m not an amputee, the depiction feels well done. In the last novel thus far of the series, Career of Evil, however, she goes further, with a sub-plot around transableism – where non-disabled people either seek to become disabled themselves or become devotees of those with a disability.
Here’s a bit about one of the characters, Kelsey, described by another:
“I’ll tell you what she wanted,” she burst out. “To be in a wheelchair—pushed around like a baby and to be pampered and the center of attention. That’s what it was all about. I found a diary, must have been a year or so ago. The things she’d written, what she liked to imagine, what she fantasized about. Ridiculous!”
“Such as?” asked Strike.
“Such as having her leg cut off and being in a wheelchair and being pushed to the edge of the stage and watching One Direction and having them come and make a big fuss of her afterwards because she was disabled,” said Hazel on a single breath. “Imagine that. It’s disgusting. There are people who are really disabled and they never wanted it. I’m a nurse. I know. I see them. Well,” she said, with a glance at Strike’s lower legs, “you don’t need telling.”
I find the way Rowling writes about transableism unsuccessful. It’s partly because it’s been added to a smorgasbord of other social ills, including drugs, domestic violence and child sex abuse, for good measure. The plot is overloaded with ‘issues’. Judging it as literature I’d say her treatment of devotees and transableism doesn’t really work. Like a subordinate clause in a sentence, it could be lifted out of the novel and the plot would still work. So it fails on the test that matters – it isn’t written about well enough. But on the larger question of whether she should write about the theme, when she is not transabled herself, I have no problem with that. I’d have no problem with a non-migraineur creating a character with severe migraines if it worked in the plot. I don’t see this as cultural appropriation.
So that brings us nicely to the whole subject of criplit. Defined as subverting orthodox interpretations of literature and other forms of representation, it also sets out some useful guidance on how to write about disability better. The criplit hash tag on Twitter is well worth taking a look at for engaging and provocative ideas about this area, as well as recommendations about what to read. However, when I look at the book recommendations on the hashtag and elsewhere it is striking that many key texts are either memoirs, or other forms of very personal writing, such as poetry or polemic essays.
Having said that, I couldn’t resist a tiny list of my own, of books by disabled writers, writing almost exclusively about their own experience, that I think are brilliant. One is Jean-Paul Bauby’s The Diving Bell & the Butterfly, written by a man with “locked-in syndrome” after experiencing a stroke. He is able to move only one eyelid, yet he is intact, human, with his experience communicated through an alphabet board. His book helps one see the universe differently. Then there is Deafhood, by Paddy Ladd, and I think many of us will know My Left Foot by Christy Brown, and some of us will have read, and admired, the poetry, autobiography and essays by Audre Lorde, in which she explores, amongst other themes, race, sexuality and health. But where is the historical fiction, science fiction, the thrillers and romantic novels by disabled writers who situate their characters in wider contexts, who include disabled and non-disabled characters as mutually dependent beings, in relationships – just as they are in life?
There are also representations of disabled people, by non-disabled writers, that do situate their experience in a wider context and are well worth reading. William Faulkner’s As I Lay Dying, is a classic text and one that I re-read every year. I include this because I think it exemplifies some of my central points – one of which is that we all become impaired, as we grow older, and so writing about that experience cannot be off limits. As the book opens, Addie, the central character, is alive, though not far from death. She narrates the first part of the book, watching and listening as her son, Cash, builds her coffin. But, going back to the camera angle point again, the book has fifteen different narrators. It pulls out and in, goes tight and wide. Another moving call to arms is Alex Haley’s Roots, in which the central character, Kunta Kinte, has part off his foot chopped off for trying to escape slavery. It sets impairment in a brutal world, which is historically accurate.
For me, those texts work. But what doesn’t work? There are ones which are less successful – most notably, this year, the book turned film of Me Before You, where a disabled wheelchair user decides to end his life rather than live as a quadriplegic. Many disabled friends protested outside the premiere in the UK and I defend their right to do so – but I also defend the right of Jo Jo Moyes to write her book. I don’t think it took full account of the other point of view – that disabled lives are lives worth living. But, at any time, any of us can be faced with this dilemma. It doesn’t only apply to people who are disabled at one particular time, so should she prevented from writing about it, as some disabled people argued? I don’t think there is anything wrong in exploring it. I think the test is: was it done well? Or was the disability element of the right to die dilemma leant on, as what is called a dramatic prosthesis? I think the latter is probably true and that the character’s disability was used to heighten dramatic tension. However, if it fails, it should fail as a piece of work, not necessarily on whether it accords with the ideology of Not Dead Yet, even if I tend to agree with it. I do think that the writer and her publishers could have done more to handle the fall-out when it became clear that so many disabled people disagreed with the book and film. I think, given the cultural history around eugenics, in which disabled people were killed as they were seen as ‘useless eaters’ it behoves those who write about such themes to tread carefully and sensitively. If you offend people, I think you should try and face them and discuss their concerns. But you have a right to write about sensitive themes as a writer.
Don’t get me wrong – I’m in accord, broadly, with crip lit principles, and not just on the point of consultation. Speak to people about their conditions if you are going to include that condition in a book. Be generous with the work of disabled writers who may have had a harder journey to get to publication. Promote their work – if you like it. Take a good, long look at the crip lit hashtag and read intensively. Do be careful with language – use what disabled people have asked to use. This isn’t that difficult – ask the community. But push back as well, if you feel your creative integrity is being challenged by dogma.
And then, whoever you are, whatever your background, don’t be afraid. Put pen to paper. Bring those walls crashing down, through your empathy – and your skill. Nothing should be off limits. You are a writer. Go and write.
 Equites, 1969, Ed D M Jones, 243, from Todd M Compton, Victim of the Muses: Poet as Scapegoat, Warrior, and Hero in Greco-Roman and Indo-European Myth And History, (Center for Hellenic Studies, 2006)
 Pharmakos and Katharma as Words of Abuse, translated by HJ Vince, text from gebhard#22
 W J W Koster, ed, commentarium in Ranas et in Aves Argumentum Equitum which is fasc 111 of Lydia Massa Positano, D. Holwerda, WJW Joster, Jo.Tzetzae Commentarii in Aertisophenenm, part 1V of W.J W Joster, Scholia in Aristophanem (Groningen: JB Wolters, 1960), trans Todd M Compton, 733a
 “Plutarch. Lycurgus: The Father of Sparta, Lycurgus 1
 Plato, The Republic, translated by Storey, checking pub date 460c
 Ibid, 1328-30a, 1335b
 Martha L Rose, The Staff of Oedipus, (University of Michigan, 2003), quoting Rosemary Garland Thompson, checking ref
 Plato, The Republic, 316-319, translation by Evelyn White, checking pub date
 Homer, (8.308-12). The Odyssey
 Plutarch, Pericles
 Homer, The Iliad, 2.216-219
 Erving Goffman, Stigma: Notes on the management of spoiled identity (Pelican, 1968), 11
 Dionysius of Halicarnassus (2.15), in Neal H Walls, The Origins of the disabled body, Disability in Ancient Mesoptomaia, in This Abled Body: rethinking disabilities in biblical studies, Hector Avalos, Sarah J. Melcher, Jeremy Schipper, (Society of Biblical Literature, 2007), 38
 Carlin. A Barton, The Sorrows of the Ancient Romans, (Princeton University Press, 1993),146
 Cicero, Oratory 2.239
 Longinus, de sublimatae 44.5
 Pliny, Natural History, 7.74-75, (Penguin, 2004), translation Jones
 Pliny, Natural History, 28.7, (Penguin 2004), translation Jones
 RRJ Garland, The Eye of the Beholder: Deformity and Disability in the Graeco-Roman World (London, Duckworth, 1995), 41
 Neal H Walls, The Origins of the disabled body, Disability in Ancient Mesoptomaia, in This Abled Body: rethinking disabilities in biblical studies, Hector Avalos, Sarah J. Melcher, Jeremy Schipper, (Society of Biblical Literature, 2007), 19
 Lennard Davis, Enforcing Normalcy, (Verso, 1995)
 William Shakespeare, Richard 111, V, vi, 78-83
 Colin Barnes, Leeds University disability archive, http://www.leeds.ac.uk/disability-studies/archiveuk/Barnes/Effecting%20Change.pdf)
 H. C. Eric Midelfort, A History of Madness in Sixteenth Century Germany (Stanford University Press, 1999) 228-276
M Miles, Martin Luther and Childhood Disability in 16th Century Germany, Journal of Religion, Disability and Health, 2001, vol 5 (4), 6
 Midelfort, 233
 Ibid, 276
 Howell, Michael & Peter Ford, The True Story of the Elephant Man, (Middlesex: Penguin, 1983)
 Treves and the Elephant Man, reprint of “The Elephant Man”, Royal London Hospital, 2003, 10-11
 DJ Kevles, In the name of Eugenics, (Harvard University Press, 1985), 145
 GK Chesterton, Eugenics and Other Evils (Cassell, 1922)
 Erving Goffman, Asylums, (Penguin, 1968),73
 Ibid, 73
Chapter 7: Brave new world?
 “Representation and its Discontents: The Uneasy Home of Disability in Literature and Film” from The Handbook of Disability Studies
 Ibid, 196.
 Ibid, 205.
Yesterday, like a lot of people, judging from Facebook and Twitter, I watched Sally Phillip’s documentary, about her own experience of having a much loved son, Olly, who has Down’s, (and two other children), and also about the wider picture once a new screening programme goes live. This new screen is non-invasive and it’s thought up to 99% of foetuses will be identified. Sally travelled to Iceland, where the test is in place, and where there is a 100% termination rate at present.
There was an outpouring of emotion on either side of the debate. Many viewers, of which some had children with Down’s themselves, praised the programme. A smaller number felt that the programme was not balanced and did not give the other side of the debate – the lack of support for families, or how best to express the woman’s right to choose, sufficiently strongly.
I think it was a very strong documentary, with a wonderful and engaging presenter. I think, from the programme, that Sally herself is on a journey, exploring the woman’s right to choose and what implications that has, after this test is introduced, for people with Down’s. It’s a very difficult area, sensitively explored. In the end, given how hard that right was won, I support the woman’s right to choose, but I do feel that we need to see far more positive images for people with Down’s and disabled people generally, in society. The medical profession does need to work on its presentation of the diagnosis too – it is not a curse, or a tragedy, to raise a disabled child. It may well be a challenge, given the cuts and the attitudes of many in society, and particular conditions present particular challenges. That’s not the same thing. Luckily for me, living with chronic migraines, this is not a condition that could be picked up with testing and no doctor has ever suggested, to my knowledge, that migraineurs do not have a right to life. But where will the dividing line fall, in the future, between those granted a right to life, and those deemed a ‘risk’ to their parents, and a burden?
It made me look back at my own book, Scapegoat: why we are failing disabled people, which was published in 2011. In the chapter, Not them but us: society’s challenge, I examined the wider issues of our attitudes towards disability. When we condemn the perpetrators of disability hate crime (the main theme of the book) we tend to believe that they are in the wrong – and that we are better than them. But our general attitudes, although they are shifting in the right direction, remain somewhat negative – especially when it comes to disabled people marry, or disabled children coming into the world. As I wrote then: “Discrimination starts before birth for a disabled person, and continues right up to the point of death. Expectant mothers are offered an increasing array of pre-natal testing and if there is the possibility of giving birth to a disabled children they are offered, quite rightly, counselling and advice on which steps to take. As a feminist, I do believe in the right to choice whether or not to continue with any pregnancy, but this does not take place in a framework of neutrality towards disability.” I haven’t diverged from that view, even though I wrote that chapter five years ago.
Lastly, as I wrote in my conclusion: “The obsession with the body beautiful, which puts such pressure on young people to self-harm and stop eating, and on people of all ages to have risky cosmetic surgery, is as damaging ow as it was in classical times, if not more so….Perhaps one of the saddest consequences of this is the choice that some parents of disabled people make, to mask the obvious signs of their child’s impairment (particularly children with Down’s syndrome) with cosmetic surgery, so that they can avoid the mockery that they would otherwise face. So where do we start to make the change? It has to start with an acknowledgment that none of us is perfect – that is what makes us human…We all grow old and infirm, and die. But at those times of vulnerability, we still believe that our humanity should be recognised, beyond our looks, our ability to work or our intellect. Disability, therefore, is part of our human condition and cannot be set apart.”
Well done to Sally, and a great production team, for raising these thorny and heart-felt questions.