Disabled:
1a: impaired or limited by a physical, mental, cognitive, or
developmental condition : affected by disability
b: incapacitated by illness or injury
2: of a device or mechanism : rendered inoperative (as by
being damaged or deliberately altered)
In English, the word disabled comes to us as the past participle of disable. From the Latin dis (‘to do the opposite of’) and the Old French (h)able (‘capable, fitting, suitable, agile, nimble’), itself from the Latin verb habere – to hold and receive. It came into use as a term in the sixteenth century. Once used primarily for impairments of a physical nature, it is now widely recognized as a term that applies to all manner of impairments. According to the World Health Organization, disabilities
is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations. Disability is thus not just a health problem. It is a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which he or she lives.
It is a complex phenomenon in part due to the growing prevalence of the social model of disability, which holds that the disability of individuals is, in fact, maintained by systemic barriers, exclusion, and negative attitudes toward these disabilities more than the physical limitations of the conditions themselves. (If a building has elevators and accessible entryways, the fact that a person uses a wheelchair doesn’t limit them in the building in any way; by contrast, a building with an inaccessible doorway and no elevators is a barrier because a person with accessibility needs cannot go through it, thus indicating that, on a structural level, the design of the building has failed to take the considerations of every different body into account.) The social model of disability stands in contrast to the medical model, which links a body directly to a diagnosis and places emphasis on the intervention of medicine as a way of solving or eradicating the particular disability or condition. ‘The medical model,’ notes Tobin Siebers, ‘defines disability as an individual defect lodged in the person, a defect that must be cured or eliminated if the person is to achieve full capacity as a human being.’ It’s not that society needs to be fixed, in other words – it’s the person who is broken. ‘Medicine and charity,’ says Siebers, ‘[and] not social justice, are the answers to the problem of the disabled body, because the disabled body is thought to be the real cause of the problems.’
In the medical model, disability is both a reality of life as well as a kind of storytelling. Every disabled story becomes a narrative – a story that has everything to do with what culture perceives of as good (able-bodiedness, beauty) and bad (disability, disfigurement), and how we, as a society, are supposed to act toward one another – and what society, or the higher powers that be, will do to us in return. Quite apart from its own physical realities – from the disabled person’s own physical realities – a disability thus becomes a symbol for everyone else, an ‘other other,’ in Siebers’s words, operating as a kind of intellectual bogeyman for the well – a whispering darkness that sits on the edge of the perceived order of the world.
In short, in the medical model, disability is almost always the villain. Disability is different because there is an assumption that there is one way of moving through the world – one way of walking, one way of seeing, one way of smell and touch, of processing information. Deviations from this assumption must therefore both require and generate explanations. A child is born with a cyst in her brain but should have been born with none, and therefore the reasons for it must be uncovered: genetic defect, in-utero injury, identifiable condition. Otherwise, how to place her? How to understand where she fits into the world? The narrative around her disability follows the same structure as the fairy tales she reads in bed at night with her mother: problem, quest, return. In the medical model, the ‘return’ involves the acquisition/ reacquisition of an able-bodied life inasmuch as this is possible – think gene therapy, think cochlear implants, think searching for a cure.
But before we had the medical model, before we had science, we had storytelling in all of its inscrutable magic. How else to make sense of a child born with a malformed limb than by telling a story about it – encasing the limb in a glass coffin of story that reaches back to magic and the gods, ever inscrutable themselves? Stories impose order even on unruly bodies. When you make something inconceivable into a story, suddenly it gains legitimacy, suddenly it operates in the realm of the possible.
So, too, with bodies that are different.
‘Fairy tales,’ argues the renowned fairy-tale scholar Jack Zipes, ‘are informed by a human disposition to action – to transform the world and make it more adaptable to human needs, while we also try to change and make ourselves fit for the world. Therefore, the focus of fairy tales, whether oral, written, or cinematic, has always been on finding magical instruments, extraordinary technologies, or powerful people and animals that will enable protagonists to transform themselves along with their environment, making it more suitable for living in peace and contentment.’
Fairy tales are among those most quintessential of stories – the ones we tell to make sense of ourselves and of the world. They are both a way of explaining the world around us and a method of imagining a world that is possible. ‘Early oral tales,’ notes Zipes, ‘were closely tied to the rituals, customs and beliefs of tribes, communities and trades. They fostered a sense of belonging and hope that miracles involving some kind of magical transformation were possible to bring about a better world.’
Imagining a world that is possible becomes particularly important when one considers fairy tales in light of the times in which they were told. It is hard to conceive of the possibility of a CT scan when you live in a society that hasn’t yet discovered electricity; it is much easier to conceive of and believe in magic, and so too in potions and fairy dust and magical godmothers, or genies who can grant wishes. Fairy tales have in so many ways concerned themselves with transformation. But because their creators – perhaps particularly in the Western world – were often not able to envision the full possibilities of science and technology, the transformations in the fairy tales that we know have necessarily been limited in crucial ways.
In ‘Hans My Hedgehog,’ a tale from the Brothers Grimm, a farmer, despairing of his and his wife’s inability to have a child (a despair magnified by the other farmers mocking their childlessness), exclaims that he would be happy to have a child, ‘even if it’s a hedgehog.’ Their son, Hans My Hedgehog, born nine months after this proclamation, is born with the upper half of a hedgehog and the bottom half of a human. Horrified, the parents keep their son behind the stove for seven years, ultimately forcing Hans to go out into the world on his own to make his fortune as a musician (he has his father bring him back a set of bagpipes from the market) and herder and tender of geese and pigs.
Hans is a plucky protagonist, unafraid, despite his parents’ treatment of him, to ask for what he wants and demand betterments in life. He gradually amasses a reputation as an excellent herder, becoming so successful at it that he is able to return to his childhood home with a herd of pigs he sells to benefit the town.
Sale behind him, Hans My Hedgehog goes out into the world once again and meets a king who has lost his way. In exchange for directions, the king agrees to give Hans My Hedgehog his daughter in marriage; however, once the king has found his way and realizes the full extent of the bargain he has made – marrying his daughter off to a half-human creature – he is reluctant to carry it out. For her part, the daughter is less than pleased. As punishment for her distaste, Hans My Hedgehog has the princess take off her clothes, then stabs her with his quills until she’s covered in blood. She flees from him in disgrace, never to return to her kingdom.
Sometime later, Hans My Hedgehog encounters another king who has gotten lost in the forest. This king is also accepting of Hans My Hedgehog’s help, but, more importantly, is amenable to the price of it; as a result, Hans My Hedgehog returns to this king’s castle and manages to get himself married to the princess. It is to her and her alone that he reveals his greatest secret: his hedgehogness is only a costume, a disguise he can take off at night. He instructs the princess and the king to have four guards grasp his hedgehog suit when he removes it and throw it onto the fire, thereby banishing his hedgehogness forever and assuming his true, permanent guise as an attractive young man. This feat accomplished, Hans My Hedgehog is able to return to his parents, beautiful princess wife in tow, and rejoice with them at the ultimate triumph over his disfigurement. His father, overjoyed at this appearance of a ‘normal’ son, is kind to Hans My Hedgehog for the rest of his life.
‘Hans My Hedgehog’ is interesting because it relies on both the protagonist’s self-advocacy and a deep undercurrent of social expectation. Hans is vocal about his wants and needs, and presses his father to let him go out into the world and live an independent life. He proves himself as a character worthy of respect by becoming quite successful at herding the pigs. He is also a character of no small musical skill; the first king, hearing the beauty of his bagpipe music in the forest, remarks on the unseen player’s talent. In his continued work to prove who he is to the world, Hans My Hedgehog is advocating for social change: he wants society to accept him as he is, to recognize the gifts he can bring to the community, hedgehog or no. There is a constant sense throughout the tale that Hans My Hedgehog is being unfairly treated by those he encounters. He is scorned by his parents, and the first king who meets him is reluctant to give away his daughter due to his distaste for Hans My Hedgehog’s appearance. The daughter herself is also ashamed to be around him, and punished for her attitude. It is only the kind king and the willing princess who learn the truth about Hans – a reward, if you will, for their good behaviour.
And yet, toward the end of the tale, we have the standard fairy-tale transformation/reveal: the hedgehogness is only a suit, one that Hans My Hedgehog can take off at will. Hans My Hedgehog gets the homecoming that one senses the narrator has been rooting for all along: the reunification of his family and the quiet, relieved joy of the princess, who, kindness notwithstanding, likely much prefers her human husband to his previous half-animal form.
Whether it’s the pumpkin in ‘Cinderella’ or the sudden appearance of the Little Mermaid’s human legs, fairy tales often pivot on something or someone becoming different at some point through the text – the unattainable suddenly made manifest through magic, fairy dust, and longing. The evil fairy transforms a spinning wheel into an instrument of death in ‘Sleeping Beauty’; the wolf transforms/disguises himself in ‘Little Red Riding Hood.’ Cinderella herself transforms from a scullery maid into a princess.
But it is never society that changes, no matter how many half-animals or scullery maids are out there arguing for their place at the table. It is almost always the protagonists themselves who transform in some way – becoming more palatable, more beautiful, more easily able to fit into the mould of society already in place. The intervention is magical rather than surgical, but one can imagine the writers of these tales arguing in favour of the medical model: the life-saving surgery, where life is synonymous with social standing and regard. The child who has surgery to repair their club foot is the same child who, in a fairy tale, would likely be visited by a fairy godmother or an evil witch, the gift of able-bodiedness dangled in front of them in a way that’s entirely irresistible.
In fairy tales, the transformation of the individual relies on fairies and magic – or the gods – because it is understood that society itself can’t (and indeed won’t) improve. Again, when viewed in the historical context of the tales, this makes at least a small amount of sense; how to fix the world when you are a peasant with a disabled child, possessed of little to no power to change the place and society in which you live? And yet the power of magic in the tales also, strangely, has the opposite effect – instead of imbuing the reader with a worldview in which change is possible and things can turn out positively for the disenfranchised, the prevalence of magic in fairy tales serves to reinforce the class and societal structures already in place, as well as traditional ideas of what it means to have a functional body in the world. This is possibly why there’s almost always a price that a protagonist pays for the magic of their transformation. You cannot simply move from one place to the next – society won’t allow it. And so the protagonist must prove their worthiness – through good deeds and gentle behaviour, as in the case of Cinderella, or, as with the Little Mermaid, through sacrifice and trial.
Failing that, perhaps one can find a magic fairy, or, as in many of the Brothers Grimm tales, shore up their belief in God. ‘While championing health and able-bodiedness as the ideal,’ says Ann Schmiesing, ‘tales in the [Brothers Grimm] frequently suggest that this ideal is unattainable, at least without divine intervention.’
To walk, to see, to hear, to touch. Gifts worth all their trouble, no matter what price must be paid.
I’m four years old, soon to be five, when I leave the hospital for the first time, after the surgery where they opened my head and sliced out bits of the cyst. I am excited to be going home. My mother and I have read all of the Little House on the Prairie books while here, some of them twice. (On the Banks of Plum Creek is my favourite. I like the idea of Mary and Laura Ingalls living in a dugout and running through the grass on their own roof.)
One day close to the end of my three-week stay, I come back to my hospital room with the nurse and find my mother and grandmother standing beside Dr. Humphreys.
‘We have three dresses for you,’ Dr. Humphreys says. He smiles. I like his smile a lot. ‘But you can only wear one of them! So you need to pick which one you want to wear.’
This is a celebration dress – I know this even when I’m four. We are celebrating because soon I’m not going to be in the hospital anymore. Soon I won’t have any bandages. Soon Margaret the nurse won’t need to wash my head and help me bathe.
I don’t remember what the other dresses looked like, but the dress I pick is pale green. It has short sleeves, and two lines of pink ribbon down the front. The skirt puffs out when I twirl, even though I can’t twirl very fast because of the bandages.
I love it. It makes me feel like a princess.
In the social model of disability, the ‘return’ from the quest involves a recognition of the different body and how it fits, differently, into the world – and from there, a recognition of how society in turn must adapt to welcome it. ‘[D]isabling environments,’ writes Siebers, ‘produce disability in bodies and require interventions at the level of social justice.’ The social model arose in the 1960s as a response, by disabled people, to the patriarchal nature of and infantilization inherent in the medical model. Transcripts from a 1975 meeting between the UK Disability Alliance and the Union of the Physically Impaired Against Segregation stress the point: ‘In our view it is society which disables physically impaired people. Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society.’ (‘Physically impaired’ is historical language; though it was in use at the time of the quote, impaired is generally considered to be language not acceptable to use in reference to the disability community today.) The social model of disability as a specific term was coined in the UK in 1983 by the disabled academic Mike Oliver.
In the social model, there is emphasis on creating space for wheelchairs that accommodate a body that cannot walk, as opposed to the need to walk at all costs; there is the growing recognition of the need for things like ASL interpretation and scent-free spaces at public events; there is, as I have touched on, the acknowledgement that public events and spaces that do not offer accessible entryways or accessible washrooms fail to consider the varied needs of the population. There is, above all, the push for disabled people to be involved in all aspects of decisions regarding their participation in society – and the recognition that society has a responsibility toward all of its citizens, up to and including the need to consider how best to meet the varying needs of different bodies. Nothing about us, without us – a saying that has been associated with the disability justice movement since the 1990s – encompasses much of the ethos that underpins the social model.
The social model of disability has steadily gained traction in the years since its inception. As with other justice movements in the early twenty-first century, the advent of social media has proven particularly helpful and galvanizing for disability justice activists, providing an accessible platform that many disabled individuals are able to access and participate in, economic barriers (access to the internet, to a computer, to a mobile phone, to libraries) notwithstanding. In the last few years alone, Twitter hashtags like #DisabledAndCute (started by Black disabled writer and activist Keah Brown), #ThingsDisabledPeopleKnow (started by Black disabled writer and activist Imani Barbarin), and #DisabilityTooWhite (started by Black disabled activist and blogger Vilissa Thompson) have done much to push the conversation about disability, the social model, and access into mainstream public attention.
This is also a kind of storytelling, though firmly set in modern packaging. But though the medium of telling is relatively new, the act of storytelling itself has a long history of speaking truth to power. The trick here is to tell stories in a way that outlines injustice but also calls on the community and the social structures in place to change so that anyone – and not just a select few – might also be able to reach for success in the future.
‘Telling stories – that is, command of the word – was vital if one wanted to become a leader, shaman, priest, priestess, king, queen, medicine man, healer, minister, and so on, in a particular family, clan, tribe, or small society,’ writes Jack Zipes in The Irresistible Fairy Tale. He argues that fairy tales, by their very nature, speak to the longing for justice that bubbles deep in every human heart – the ability to tell a story that captivated was, in bygone times, an essential part of governance, inextricably bound up with power. It is arguably still an essential part of governance today – one need only look to the words of people like Barack Obama to acknowledge the ability that words and stories have to inflame the minds and hearts of a generation.
Conversely, one need also only look to the words of someone like Donald Trump to see how words can also do the opposite – pack prejudice and fear into tightly controlled narratives that then infect the thoughts of many. In these instances, stories become narratives that champion the individual’s triumph as opposed to narratives that change the world so everyone can win. Perhaps more importantly, stories become narratives that champion the individual’s triumph specifically at the expense of those who do not win – a process of othering that has wide-ranging implications.
In Illness as Metaphor, Susan Sontag notes that ‘modern totalitarian movements have been peculiarly – and revealingly – inclined to use disease imagery.’ Thus did we see Donald Trump tweet on June 19, 2018, that ‘[Democrats] want illegal immigrants, no matter how bad they may be, to pour into and infest our Country, like MS-13’ (italics mine). Thus did David Ward, a former US immigration officer, talk on Fox News in October 2018 of migrants who bring diseases ‘such as smallpox and leprosy and [tuberculosis] that are going to infect our people in the United States.’ In this kind of real-world storytelling, the fear-mongering is focused specifically on the aspect of disease – and, by extension, disability – as something that others. To avoid it, we must also avoid the people who are suffering. Because nobody wants to be other, even by association. In this way, telling stories – command of the word – often works to disenfranchise those who are already disenfranchised, further decreasing their own chances of success and thereby increasing the continued success of a particular few.
Put another way: the medical model celebrates an individual’s triumph over disability, while the social model celebrates society’s collective power and responsibility to consider the needs of all, thus making disability an integrated element of the society in which we live.
(It should be noted that the social model is not without its criticism. In particular, recent critiques note that it is not always possible to improve the social environment so that all aspects of a disability are accounted for and mitigated. Ramps might help a wheelchair user into a store, but ramps and accessible washrooms do not erase pain or fatigue – and the push for social adjustments that account for certain aspects of a disability but not all can often have the effect of silencing those who might speak about their pain or other difficulties but do not, for fear of seeming to speak against the social model itself.)
Disabled people, along with other marginalized groups, have long borne the brunt of disenfranchisement in storytelling, which is why the explosion of social media offers such a powerful opportunity. In demanding the space to tell our own stories, in advocating for the social model of disability and for its different ways of viewing the world, disabled people are taking back control of the narrative, and urging the world to rethink the idea of the individual triumph, doing the work of dismantling the narratives that have been told about disabled people for thousands of years.
And yet these narratives run so much deeper than we realize. Like the thorns that grew to submerge Sleeping Beauty’s castle in the Disney film, their roots run gnarled paths far below the ground. To understand how the medical and social models of disability function in the world of our everyday, and how these models and ways of thinking shape the words that guide countries on a social, political, and structural level, we must also understand how the stories that we’ve told in the past have worked to entrench the idea of the disabled other as – at best – an object of pity, and at worst an invisible someone, barely there at all.
In Care Work, author and disability activist Leah Lakshmi Piepzna-Samarasinha explores the rise of disability justice against the specific concerns and experiences of Black, poc, and queer disability politics. In looking specifically at disabled IBPOC survivor narratives, Piepzna-Samarasinha raises the spectre that haunts most of the fairy tales we know – this question of there being only two ways for a story to end. ‘[S]omething terrible and murky happens in a bedroom,’ they write, ‘there’s a lot of DARKNESS, and then the sun comes out, you speak to a nice therapist in a pastel office for six sessions, and then you’re fixed, you marry your husband or get a girlfriend and have a kid, and it’s all pastel soft lighting fade out forever. You either do that or you’re fucked – you abuse your kids, and you die a horrible death. Those are the two options in the back of folks’ heads.’
These two options – happiness forever or terrible tragedy and sadness until death – sit in the backs of our heads in many ways because of the stories we’ve all been told as children. Happy endings are happy precisely because they have no darkness – unhappy endings, conversely, are that way because of a total absence of happiness and light.
For many able-bodied people in the world today, the idea of disability comes shrouded in darkness. It is inconceivable to so many that someone could be disabled and also happy, because we as social beings have been taught, through the books we read and the films and television we watch and the music we listen to, the stories we tell one another, that to be disabled is to be at a disadvantage: to be a lesser body, to be a body that cannot function at the same level as other bodies in society. To be disabled is to be in pain, physically and psychologically, emotionally and spiritually – and what possible goodness can be found in pain? What sort of happy ending can be found in constant struggle?
(And yet society also parrots an accompanying surface truth: that we are all individuals, that we all have different ways of being in the world. Of course life isn’t all happy endings, society says – while simultaneously venerating happiness and joy and shying away from struggle and pain. Of course the larger world believes – in an intellectual, thought-exercise kind of way – that it is possible to be happy and also disabled – until that same larger world is faced with the specific complexities of what it means to occupy the disabled body. Of course society can expand and grow and change to account for bodies of all types – until that body is seen as unreasonable, or demanding, or wanting ‘special treatment,’ in which case the world falls back on the ableism that has underpinned our stories for centuries, and lets out a resounding cry of that’s unfair.
It’s unfair that disabled people get special treatment. It’s unfair that disabled people get to park closer, or that disabled people get discounts, or that disabled people are allowed to bring their service animals into a restaurant. It’s unfair that disabled people get to stay at home while other people have to go out and work!)
Often, the medical and social models of disability embody this happy/unhappy dichotomy – and depending on where you’re standing, the question of which model represents the happy ending is open to interpretation. Proponents of the medical model see the disabled life as an unhappy ending because the medical model can fix it; proponents of the social model see the prospect of a cure as an unhappy ending because it removes the responsibility of bettering the social environment from society at large and places the onus on the individual to transform, thus eradicating the physical differences and accompanying memories that so often tether the disabled person’s experience of the world.
Who would I be, for example, if I hadn’t been born the girl with the cyst in her brain? My experiences at the hospital and with surgeries, with the wheelchair and my crutches, with my limp and the eventual bullying that came about as a result of all of this – these experiences have shaped me, have made me who I am. Had I been born without that cyst, I would have a different life now. I would not be who I am today.
In Disability Theory, Siebers advances a theory of what he terms complex embodiment, wherein elements of both the medical model and the social model guide how the body makes its way through the world. ‘The theory of complex embodiment,’ he writes, ‘raises awareness of the effects of disabling environments on people’s lived experience of the body, but it emphasizes as well that some factors affecting disability, such as chronic pain, secondary health effects, and aging, derive from the body.’
In effect, it is possible to be disabled both by society and by pain; to struggle both as a result of the overwhelming bias in favour of the able body and as a result of the unique nature of one’s own body and its different challenges in the world. Disability and able-bodiedness are both merely points on an enormous spectrum of human variation, and the work of being in the world at all entails being on this spectrum in some way, shape, or form.
It is not hard to travel from this reality of a spectrum of disability through to a subsequent spectrum of happiness, where it is possible to recognize happiness, like ability and disability, as a malleable, changeable quality that doesn’t exist in static form. Just as it is possible to move from ability to disability – and also possible, through innovations both medical and social, to move from disability to ability and back again – so too is it possible (and, in fact, more realistic) to move from happiness to unhappiness and back again, over and over, as we move through life.
We mustn’t tell this to the princess, however. Who is she if she can’t walk down the aisle to meet her prince?
In the Brothers Grimm’s ‘The Maiden Without Hands,’ a miller is visited by the Devil, disguised as an old man, who promises the miller riches in exchange for whatever lies beyond his mill. The miller, thinking the Devil means an old apple tree, gladly makes the bargain; it is only when he returns home to his wife, who is overjoyed at the jewels and money that now overflow their cupboards, that he discovers the truth: his daughter, beautiful and pious, was standing on the other side of the mill when the Devil struck his bargain.
In three years, the Devil returns to claim the maiden. First she draws a circle round herself and purifies it with water so he can’t get to her; then, when the Devil angrily instructs the father to rid the house of water so she can’t purify herself anymore, she weeps onto her hands and purifies them with her tears.
‘Chop off her hands!’ the Devil instructs, and the father, terrified, does as he is told.
But the maiden weeps over her stumps, purifying them once again, and the Devil retreats in defeat. The father, now a rich man, promises to look after his daughter for the rest of her life, but she refuses to stay. Instead, she instructs her father to tie her severed hands to her back and casts herself out onto the mercy of the world.
She comes to a kingdom, and a royal garden. Suffering from hunger, she falls to her knees and cries aloud to God; an angel appears and lets her into the garden, then brings her fruit from the trees. But she is discovered, and the angel vanishes. Thinking she’s a thief, the soldiers throw her in the dungeon.
She is rescued by the king, who falls in love with her and brings her out of the dungeon. When they marry, the king gives her a pair of silver hands that she learns to use in place of her real ones. But the Devil, still angry at his thwarted attempt to take her, isn’t finished. A year after their marriage, the king goes away to war and the Maiden Without Hands, now queen, gives birth to a son; the Devil intercepts the messenger who is bringing this news to the king and gives him a message to say that the queen has given birth to a changeling. The king reads the fake message and is distressed, but still loves his wife – he instructs the messenger to go back and tell the kingdom that his wife and the child must be protected.
But the Devil intercepts the message again, and the messenger brings back a falsified edict, purportedly from the king, that the queen and the child are to be killed. The king’s old mother helps them both escape from the castle, and the Maiden Without Hands finds herself wandering the world again, this time with her child.
They come to a hut in the forest; an angel appears to them and tells the queen that she may stay there, untroubled. They live here for fourteen years until the king – who spent the first seven years fighting on the battlefield and then, having learned of the Devil’s treachery, the last seven years searching the wilderness for his family – finally finds them again. They return to the kingdom and live happily for the rest of their days.
The queen’s hands have grown back in the interim, as hands in fairy tales are wont to do if you pray hard enough.
Changeling, in itself, is an interesting term. Historically, the idea of a changeling child has been inextricably tied up with magic; in Irish folklore, changelings were thought to be the children of fairies who’d been swapped in for healthy human children. Fairy children were considered to be sickly, and it was often expected that they wouldn’t live long; families would leave their ‘changeling’ children out to die in the cold as a result, convinced that their actual child was lost to them forever.
The belief was held that fairies swapped out human children for any number of reasons: for companionship, out of revenge, to have a human child as a servant. Usually, the suspicion that a child was a changeling arose right at birth; but in some cases, the question didn’t come up until years later. In 1826 an Irish woman drowned a three-year-old boy in her care in the River Flesk because he couldn’t speak or walk and she was trying to get ‘the changeling out of him’; in 1895 the Irishwoman Bridget Cleary was killed by her husband and relatives after a short illness, with the husband invoking what became infamous as the ‘fairy defence.’
Tellingly, the question of whether a child was a changeling or not was directly tied to whether the child showcased visible disabilities at birth – or, in cases of later development, whether the child/young person exhibited behaviour that was thought at the time to be incomprehensible or strange. Nineteenth-century beliefs posited that autistic children were the product of fairies – the belief that fairies themselves spent long amounts of time completing repetitive tasks like counting gold coins echoes documented elements of autistic behaviour. (If there is no worldly explanation, there is most assuredly a magical one.)
Consider them, for a moment. A child born with a caul, a boy with a club foot, a girl with spina bifida, left outside to shiver and cry until they are no more. A child three centuries ago, born with cerebral palsy, though no one yet knows what it is, only that the child can’t eat or speak or roll over. Grief-stricken parents who curse the fairies and leave the child outside to die of starvation or exposure. Children who aren’t magical, but only different.
How many children have we lost to the cold and snow over the centuries – children born not to a king and queen but to common people, mothers and fathers with no knowledge of the world apart from the stories they’ve told themselves at night before their fires? How many lives have been smothered or disappeared or haven’t been allowed to flourish because of the stories we tell?
‘The Maiden Without Hands,’ notes Ann Schmiesing, stands in stark opposition to a tale like ‘Hans My Hedgehog,’ precisely because the maiden is meek and subservient, where Hans My Hedgehog is a vocal activist in his own life. The maiden is ready and willing to cast herself into the world, to believe that society will meet all of her needs, whereas Hans My Hedgehog is instead focused on proving himself within the confines of the system. In contrast to Hans My Hedgehog’s rage and advocacy, the Maiden’s faith is as much an undercurrent throughout the tale as is her amputation.
It’s tempting to think that ‘The Maiden Without Hands’ espouses the social model of disability, wherein disabled individuals operate within the world as a result of a society that takes care of their needs. But, in reality, this fairy tale operates squarely within the realm of the disabled charity trope, which many if not all modern disabled people recognize in some form or another.
The charity model shares similarities with the medical model of disability in that the disabled person is once again seen as a flaw – as someone in possession of a less-than-perfect body, a disfigured body, someone who is set apart from society as a result of these differences. In each case, the disabled person is at the mercy of others – in the medical model, medical professionals are the experts who can help the disabled individual and ultimately, hopefully, eradicate the disability; in the charity model, the disabled person is someone to be pitied and saved by both the medical and social establishments. The medical world will work to cure the physical, while the social world will work to improve the life of the disabled person through charity and magnanimous good deeds.
The charity model, as noted by the online resource Disabled World, ‘[d]epicts disabled people as victims of circumstance who are deserving of pity.’ It relies on the time-honoured tradition of noblesse oblige (where those with means – literally, the ‘nobles’ – are obligated to improve society by giving back and sharing their wealth), but instead of the rich giving to the poor, the able-bodied are posited as those who instead deign to help the disabled. Yet while the idea of being charitable certainly seems like a nice thing to aspire to – the philanthropist is inevitably seen as a more morally acceptable figure than Ebenezer Scrooge – it’s worth noting that charity also functions as a way of reinforcing existing social structures. As long as individual people are charitable, as long as individual charities and charitable actions exist to make gestures toward those who are less fortunate, there is less need for the sweeping societal change that would do away with the hierarchies and gross economic and structural inequalities that disadvantage people in the first place. Essentially, the existence of charity, by making concern for one’s fellow humans less a responsibility and more an active choice, works to undermine the eradication of poverty and injustice.
(I am not, of course, arguing against the presence of charities – I think charities can and do accomplish wonderful things. It’s good to encourage people to think of ways they can give to the world, and especially to think of how they might consider those less fortunate; the key is that we need to stop thinking of those less fortunate as being so because of some specific circumstance [disability, say] and more because of structural inequalities that the ‘more fortunate’ continue to uphold no matter how much money they give away.)
In Illness as Metaphor, Susan Sontag notes that disease has often been associated with moral failings.
Psychological theories of illness are a powerful means of placing the blame on the ill. Patients who are instructed that they have, unwittingly, caused their disease are also being made to feel that they have deserved it … Nothing is more punitive than to give a disease a meaning – that meaning invariably being a moralistic one.
In literature, this has also been the case with disability. In the same way that sufferers of a disease become poster children for the ravages of the disease itself (TB, cancer, AIDS), disabled people become iterations of loss, of struggle, of the ways in which the world is not kind to those who are different. And in the same way that disease, for Sontag, then becomes a metaphor – something is a cancer, something spreads like the plague – so too does disability often become emblematic of these time-worn but still somehow newly urgent fears: loss of independence, social ostracization, loneliness in an increasingly connected world.
And in the same way that the medical model places the fault of disability at the body of the disabled person and lifts the medical professional up as the ‘expert,’ in the same way that the charity model removes the blame for society from the shoulders of the magnanimous philanthropist and reinforces hierarchical norms, psychological theories of illness lift the blame and responsibility for illness from the shoulders of society and place it squarely within the fault of the patient. If one had only refrained from some behaviour or practised others or been more devout or had more faith, the illness might have been avoided. (In the nineteenth and early- to mid-twentieth centuries, it was believed in some circles that melancholy patients might have avoided cancer if they had been happier; in the eighteenth century, those who were delicate and high-strung and prone to fits of excitability and high emotion might have avoided tuberculosis by practising a calmer, quieter kind of life.)
This sort of thinking sounds ridiculous now – except that when it comes to disability, it’s often still engaged in, albeit in subtler (and arguably more damaging) ways. Disabled people are still brought to faith healers; they are told to drink more water or drink green tea or do detoxes or try hypnosis to remove barriers of the mind as a way of overcoming physical impairments. Disabled people are encouraged to ‘push through’ and ‘exercise’ and are reminded over and over again that the only disability is a bad attitude.
And when disabled people do manage to ‘push through’ in whatever way the able-bodied society sees fit, they are lauded as examples for all, as people who have refused to let themselves be ‘confined’ by their physical limitations in much the same way as people are spoken of as being ‘confined’ to a wheelchair.
Look at what you’ve overcome, society says. You’re such an inspiration.
Inspiration porn, a phrase coined by the late Australian disability activist Stella Young in 2012, refers to the portrayal of disabled people as inspirational precisely because of their disability. Inspiration porn goes hand in hand with the idea of the disabled body as less. If a disabled body is seen as less, then what that body can achieve is also less – and yet somehow, paradoxically, more: more difficult, more noble, more special.
In an April 2019 article for Bustle, Imani Barbarin recounts going to a ballet class when she was seven. ‘I wanted to develop art,’ she wrote, ‘but the teachers just wanted me to be seen. I wanted to be challenged, but no one challenges those born with “challenges.”’ Thus does the less of the disabled body become more in the eyes of the able-bodied world. The disabled body cannot meet the same bar as the body that is not disabled, and so the bar is lowered. When the disabled person meets the expectations of this new, lowered bar, they are cheered and congratulated.
You want to dance, but you have cerebral palsy and you’ll never be a prima ballerina. So instead of creating a dance that responds specifically to the needs of your own body, you’re given token representation and told you should be happy with being able to do this much.
Look at you, meeting this much lower bar. Look at you, trying to be like able-bodied people. That’s more than enough – that’s inspiring.
As with the charity model, psychological approaches to disability work to take the blame away from society and put it on the individual – to make disability not a lived, mundane reality but a temporary struggle that can be overcome if one has the inner and outer strength to do it. (The corollary here is that those who do not ‘overcome’ their disabilities – or fail to appreciate the so-called ‘accomplishments’ they make in the world of the disabled body’s lowered bar – fail because of their own lack of strength or effort.)
Your disability is causing you pain? Do yoga. Struggling because of mental health issues? Meditate. The more you focus, the more you’ll improve, and the less society at large needs to worry about having different kinds of dance classes or accessible entryways or accessible bathrooms or clearly marked accessible parking, to say nothing of captions or ASL or quiet rooms that offer respite from external stimuli.
After all, the kingdom didn’t need to change for the Maiden Without Hands, did it? She got her hands back because of her faith. (The only disability is a bad attitude.)
She did that all on her own.
I’m six years old when I go back to school after both my surgeries. Grade 1. There is, as mentioned, a wheelchair, and a taxi that drives me to school. There is one half of a hexagonal table that I get to sit at all by myself because my wheelchair doesn’t fit under the regular desks. There are classmates, again as mentioned, who are happy to push me around in the schoolyard until they get bored and don’t want to push me anymore. Sometimes – most times – it is easier to stay inside and read books, so that’s what I do.
The cast on my leg begins to smell after a while; bathing is an ordeal because I am not allowed to get it wet. My mother has to help me because my right leg has to hang out of the tub at all times.
After the cast comes off, I work with a physiotherapist named Eric. He has dark hair and a beard and glasses and he reminds me of Robert Munsch (author of the beloved Canadian children’s book The Paper Bag Princess). Or does Robert Munsch remind me of Eric the physiotherapist? I don’t remember.
I don’t remember much about this time, to be honest. The surgery, the two or three years after.
The memories start a bit later, when my nemesis arrives in Grade 3.
Cerebral palsy, traditionally, falls into four different classifications. The first classification, spastic cerebral palsy, refers to instances where muscle tightness and tone, or lack thereof, is the defining characteristic of the condition. The second type, ataxic cerebral palsy, is characterized by increased difficulty with fine motor skills, and difficulty with auditory and visual processing. The third type, dyskinetic or athetoid CP, is characterized by mixed muscle tone with involuntary motions. The fourth type, mixed CP, combines features of all four categorizations into one condition.
Symptoms can range from so minor as to be almost unnoticeable through to complete muscle paralysis. In 70 per cent of cases, CP is congenital – it arises out of some trauma or occurrence before birth. In my case, the cyst that caused the condition grew in my mother’s womb alongside my neurons, my skull, my fingers and toes. Up until the end of high school, I had a MedicAlert bracelet that spelled it out for paramedics in the event of a disaster. Spastic cerebral palsy, mild. VP shunt, disconnected.
CP can also occur after birth. A traumatic entry via the birth canal, or the deprivation of oxygen soon after entry into the world. An umbilical cord looped tightly around the neck. Twenty per cent of cases happen this way. In the final 10 per cent of instances, the condition arises as a result of bacterial meningitis, viral encephalitis, and accidents or injuries that might occur from birth up to the age of three.
It is not a progressive condition, insofar as the initial brain injury that causes muscle difficulty doesn’t worsen over time. There is no cure. Instead there are surgeries and physiotherapists, braces, special shoes.
Cysts like the one that grew in my head are a result of brain lesions, which themselves form after some kind of in-utero injury. The space left behind by a brain lesion fills with water and becomes a cyst. The cyst puts pressure on the brain, thereby damaging motor neurons, thereby impairing movement. A child walks with her foot turned inward. When that’s fixed, a child limps.
But that child, that lucky child, gets to walk, after all. She can run. She can even dance, albeit not very well.
Why does it matter, then, if secretly that little girl wishes she could look like a princess; if she keeps pulling herself back to that moment in that green dress, leaving the hospital? What does this have to do with anything?