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 if you want to buy it.
EDITED SPEECH FOR NOTTINGHAM FESTIVAL OF LITERATURE, 11 NOVEMBER, 2016
A message from over the wall
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 inevitable 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.
For parts Two, Three and Four of the speech, do pop over to my website to read the rest (or, of course, you can listen on the link above).
A teaser from Part Four is below, which looks at identity politics and literature.
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.
Happy Hallloween! Here’s a video of Spooky Ride, my first ever pop-up book, published by Tango Books way back in 2001. Spooky ride was the start of a long and fruitful relationship with Tango Books that still continues. The paper engineer for the project was the very patient Matt Johnstone whom I bombarded with questions at the time. It wasn’t until pop-up book 2 that I took on that role myself, picking it up as I went along.
I’d seen a funfair ghost train in Finsbury Park and wondered how that could translate into 3D book. The final book has one continuous train track running through holes in the pages, out the back of the book, round to the front and back in again – so you can read it over and over and over and over… My brief was to base the illustration style a little on ‘Funnybones’, keep the colours pure and make it scary! – well, sort of, it’s a children’s book.
I am a huge fan of public libraries; I’ve had a library card since I was six. Nowadays, they offer you far more than just books. With my library card, for example, I can access the Oxford Dictionary of National Biography (the DNB) or read The Times or The Guardian online, and much more. And libraries are currently suffering from ferocious budget cuts.
So, when I became the UK Children’s/Young Adult Book Review Editor for the quarterly Historical Novel Society Review, I decided to offer the ex-review copies to my local library. Every few months, when my floor round my desk has once more disappeared under books, I email Tony Brown, the Stock and Reader Development Manager of Islington Borough library, label the email: Books looking for a good home, and send him a book list. Would he like any of them? So far, he has always said, ‘Yes, please,’ to the lot.
I always get far more books than I, or my wonderful stable of reviewers, can review; often because they are not actually historical (a dragon on the cover, for example, is a giveaway; or the recent book where Lady Jane Grey’s husband has become a horse; or a book featuring jokey zebra gladiators) or where I’ve been sent two or more copies of the same book. So Tony gets an eclectic mix.
Here are six examples of recently reviewed Historicals which I hope other readers will now be able to enjoy in my new list of books for Tony.
Yokki and the Parno Gry by Richard O’Neill and Katharine Quarmby
Illustrated by Marieke Nelissen
Yokki and the Parno Gry by Richard O’Neill and Katharine Quarmby is a traditional Travellers’ tale with delightful pictures of their everyday lives. It is about the power of the imagination to help in times of hardship and it’s aimed at children of four plus.
And I Darken by Kiersten White
And I Darken by Kiersten White, the author turns Vlad the Impaler, the 15th century Transylvanian warlord, into a girl, Lada. Lada must fight to succeed her father and ruthlessness is the key to her survival. As the reviewer wrote: This is not a book for the squeamish. For girls, age fifteen plus.
Nancy Parker’s Diary of Detection by Julia Lee
Nancy Parker’s Diary of Detection by Julia Lee is a murder mystery set in the 1920s and our heroine is a housemaid who can’t spell. I thoroughly enjoyed this lively story – and the amount of work poor Nancy has to do is 100% accurate for the period. For girls of ten plus.
Rugby Player by Gerard Siggins
Gerard Siggins is a well-respected Irish writer follows the adventures of the 21st century young rugby player, Eoin Madden, with a gift of seeing ghosts from Irish history. Rugby Flyer features real life Prince Alexander Obolensky who became an Irish football legend in the 1930s. A great read and boys of ten plus will love it.
These Shallow Graves by Jennifer Donnelly
These Shallow Graves is set in New York in 1890, where young socialite, Jo Montfort, uncovers the truth about her father’s untimely death. The reviewer praised this book for depicting a realistic late 19th century New York, with a believable heroine struggling with the restrictions on a well-brought-up young lady’s behaviour. This is a young adult novel but my guess is that it will be a crossover book.
Hell and High Water by Tanya Landman
The publisher’s publicity department actually sent me three copies of Tanya Landman’s Hell and High Water! And I can understand their enthusiasm. It concerns a mixed-race boy in 18th century England, struggling to find his place in the world. Landman doesn’t pull her punches about the ignorance, corruption and bigotry of the time. Aimed at both sexes, age twelve plus.
What I enjoy about the Historical Novel Society is that I can keep up with what’s out there and what publishers are looking for. Children’s/YA novels are changing all the time; boundaries are being pushed; and difficult subjects, like race, are tackled openly which would previously have been mentioned more obliquely. Modern children’s Historicals can be challenging as well as terrific reads.
There is a real variety of books for Tony to choose from.
Most of the time I make up stories and concentrate on fiction. However, for about two years I worked on a Memoir about our younger adopted son, who joined the family when he was nearly four years old. The whole Memoir has not seen the light of day. In other words, I have not found a publisher, but I was happy to have a short extract published in an anthology edited by Dr. Kate Massey.
“Tangled Roots – True Life Stories About Mixed Race Britain”.
My true-life story is one of at least twenty five varied and moving stories. It is entitled ‘A Rock for Jah’. It tells about the first time we saw Jah. He was with a short-term foster family, where he had been staying for eighteen months, which was far longer than planned. The family was wonderful and they had been preparing him to move on to a ‘forever family’, but it must have been difficult for a little child, not quite yet four years old, to understand why he had to move onto an entirely different family again.
The reason why I called my story “A Rock for Jah” is because the first time he saw my husband and myself, we showed him a photo of our other three children. It was a holiday snap of them sitting on a big rock in Scotland. Jah examined the photo solemnly and he then pointed out something nobody else had observed – a little rock next to the big one. “There’s a Rock for Jah” he said. It was moving to witness how deeply he wanted to belong somewhere. He had spotted this tiny rock where he could ‘belong’.
Jah’s birth family was partly African, partly from the West Indies and partly white British, so clearly his story belongs in a collection dedicated to multicultural Britain. However, we had already adopted a son from a Caribbean background and we were already a mixed race family before Jah joined us.
The back cover of the book, states “12% of UK Households are mixed race, although experts estimate the actual number of mixed race people may be more than two million – double official figures..”
The collection is described as “a shockingly honest, funny and heart-breaking collection of memoirs revealing the human dramas behind the phenomenal success of ‘mixed Britannia’.”
You can find out more about Tangled Roots on the website www.tangledroots.eu.
Once I realised that I was not going to get my Memoir published, I started writing a blog – Adoption Reflections. It is a very interesting way to communicate to others around the world. More about this in my next Buzz About Books blog post.
I was at a superb talk given by Dr. Eva Griffith at the London Metropolitan Museum, about ‘Shakespeare’s Rivals’ a few weeks ago.
During it we were allowed to look at the documents of the period, which were sometimes just little pieces of paper, that when pieced together told some of the social history of the time. I was hooked.
Old pieces of paper intrigue me. The official name of course for those scraps is ‘ephemera’ described as ‘transitory written or printed material not meant to be retained or preserved’. You know, those are the bits that turn up years later in forgotten diaries like bus tickets, shopping lists, scribbled lyrics written after a break up.
I have one piece of paper that was so important to me that I’ve have kept it ever since I was twelve.
It came with me when as a child we immigrated to the States and then I brought it back again still intact years later when we arrived home to The Isle of Bute in Scotland again.
My treasured item was a postcard of acknowledgement from the publishers Blackie & Son Ltd, to say that they had received my work.
Imagine this…. aged twelve I’m sitting at the kitchen table scribbling in longhand and whizzing through a dozen school jotters to create my book called ‘‘Adventure Isle”. (For those who might be moderately interested it was an adventure in Enid Blyton style with lots of descriptions of food…just the way she did it) When it was finished I went to the local printers to see if I could get someone to type it up for me but it was too expensive so I wrapped all the jotters up lovingly in a brown paper package and posted them off.
One week later the mail arrived and in it was a postcard. It simply read:
“Blackie & Son’s Publishers acknowledges the receipt of ‘Adventure Isle’ by Margaret Nicol”
For me this was a magical moment. I was a writer and I could prove it!
The postcard was my trophy and I’ve kept it ever since just to remind myself that’s who I am…in case I forget.