Freaks: Gaze and Disability

Introduction: those damn colored glasses

The image below is probably my favorite illusion (in fact I wrote about it before).

At a first glance it looks like a family in a room, having breakfast.
Yet when the picture is shown to the people living in some rural parts of Africa, they see something different: a family having breakfast in the open, under a tree, while the mother balances a box on her head, maybe to amuse her children. This is not an optical illusion, it’s a cultural one.

The origins of this picture are not certain, but it is not relevant here whether it has actually been used in a psychological study, nor if it shows a prejudice on life in the Third World. The force of this illustration is to underline how culture is an inevitable filter of reality.

It reminds of a scene in Werner Herzog’s documentary film The Flying Doctors of East Africa (1969), in which the doctors find it hard to explain to the population that flies carry infections; showing big pictures of the insects and the descriptions of its dangers does not have much effect because people, who are not used to the conventions of our graphic representations, do not understand they are in scale, and think: “Sure, we will watch out, but around here flies are never THAT big“.

Even if we would not admit it, our vision is socially conditioned. Culture is like a pair of glasses with colored lenses, quite useful in many occasions to decipher the world but deleterious in many others, and it’s hard to get rid of these glasses by mere willpower.

‘Freak pride’ and disability

Let’s address the issue of “freaks”: originally a derogatory term, the word has now gained a peculiar cultural charm and ,as such, I always used it with the purpose of fighting pietism and giving diversity it its just value.
Any time I set out to talk about human marvels, I experienced first-hand how difficult it is to write about these people.

Reflecting on the most correct angle to address the topic means to try and take off culture’s colored glasses, an almost impossible task. I often wondered if I myself have sometimes succumbed to unintended generalizations, if I unwillingly fell into a self-righteous approach.
Sure enough, I have tried to tell these amazing characters’ stories through the filter of wonder: I believed that – equality being a given – the separation between the ordinary and the extra-ordinary could be turned in favor of disability.
I have always liked those “deviants” who decided to take back their exotic bodies, their distance from the Norm, in some sort of freak pride that would turn the concept of handicap inside out.

But is it really the most correct approach to diversity and, in some cases, disability? To what extent is this vision original, or is it just derivative from a long cultural tradition? What if the freak, despite all pride, actually just wanted an ordinary dimension, what if what he was looking for was the comfort of an average life? What is the most ethical narrative?

This doubt, I think, arose from a paragraph by Fredi Saal, born in 1935, a German author who spent the first part of his existence between hospitals and care homes because he was deemed “uneducable”:

No, it is not the disabled person who experiences him- or herself as abnormal — she or he is experienced as abnormal by others, because a whole section of human life is cut off. Thus this very existence acquires a threatening quality. One doesn’t start from the disabled persons themselves, but from one’s own experience. One asks oneself, how would I react, should a disability suddenly strike, and the answer is projected onto the disabled person. Thus one receives a completely distorted image. Because it is not the other fellow that one sees, but oneself.

(F. Saal, Behinderung = Selbstgelebte Normalität, 1992)

As much as the idea of a freak pride is dear to me, it may well be another subconscious projection: I may just like to think that I would react to disability that way… and yet one more time I am not addressing the different person, but rather my own romantic and unrealistic idea of diversity.

We cannot obviously look through the eyes of a disabled person, there is an insuperable barrier, but it is the same that ultimately separates all human beings. The “what would I do in that situation?” Saal talks about, the act of projecting ourselves onto others, that is something we endlessly do and not just with the disabled.

The figure of the freak has always been ambiguous – or, better, what is hard to understand is our own gaze on the freak.
I think it is therefore important to trace the origins of this gaze, to understand how it evolved: we could even discover that this thing we call disability is actually nothing more than another cultural product, an illusion we are “trained” to recognize in much the same way we see the family having breakfast inside a living room rather than out in the open.

In my defense, I will say this: if it is possible for me to imagine a freak pride, it is because the very concept of freak does not come out of the blue, and does not even entail disability. Many people working in freakshows were also disabled, others were not. That was not the point. The real characteristics that brought those people on stage was the sense of wonder they could evoke: some bodies were admired, others caused scandal (as they were seen as unbearably obscene), but the public bought the ticket to be shocked, amazed and shaken in their own certainties.

In ancient times, the monstrum was a divine sign (it shares its etymological root with the Italian verb mostrare, “to show”), which had to be interpreted – and very often feared, as a warning of doom. If the monstruous sign was usually seen as bearer of misfortune, some disabilities were not (for instance blindness and lunacy, which were considered forms of clairvoyance, see V. Amendolagine, Da castigo degli dei a diversamente abili: l’identità sociale del disabile nel corso del tempo, 2014).

During the Middle Ages the problem of deformity becomes much more complex: on one hand physiognomy suggested a correlation between ugliness and a corrupted soul, and literature shows many examples of enemies being libeled through the description of their physical defects; on the other, theologians and philosophers (Saint Augustine above all) considered deformity as just another example of Man’s penal condition on this earth, so much so that in the Resurrection all signs of it would be erased (J.Ziegler in Deformità fisica e identità della persona tra medioevo ed età moderna, 2015); some Christian female saints even went to the extreme of invoking deformity as a penance (see my Ecstatic Bodies: Hagiography and Eroticism).
Being deformed also precluded the access to priesthood (ordo clericalis) on the basis of a famous passage from the  Leviticus, in which offering sacrifice on the altar is forbidden to those who have imperfect bodies (P. Ostinelli, Deformità fisica…, 2015).

The monstrum becoming mirabile, worthy of admiration, is a more modern idea, but that was around well before traveling circuses, before Tod Browning’s “One of us!“, and before hippie counterculture seized it: this concept is opposed to the other great modern invention in regard to disability, which is commiseration.
The whole history of our relationship with disability fluctuates between these two poles: admiration and pity.

The right kind of eyes

In the German exhibition Der (im)perfekte Mensch (“The (im)perfect Human Being”), held in 2001 in the Deutsches Hygiene Museum in Dresden, the social gaze at people with disabilities was divided into six main categories:

– The astonished and medical gaze
– The annihilating gaze
– The pitying gaze
– The admiring gaze
– The instrumentalizing gaze
– The excluding gaze

While this list can certainly be discussed, it has the merit of tracing some possible distinctions.
Among all the kinds of gaze listed here, the most bothering might be the pitying gaze. Because it implies the observer’s superiority, and a definitive judgment on a condition which, to the eyes of the “normal” person, cannot seem but tragic: it expresses a self-righteous, intimate certainty that the other is a poor cripple who is to be pitied. The underlying thought is that there can be no luck, no happiness in being different.

The concept of poor cripple, which (although hidden behind more politically correct words) is at the core of all fund-raising marathons, is still deeply rooted in our culture, and conveys a distorted vision of charity – often more focused on our own “pious deed” than on people with disabilities.

As for the pitying gaze, the most ancient historical example we know of is this 1620 print, kept at the Tiroler Landesmuseum Ferdinandeum in Innsbruck, which shows a disabled carpenter called  Wolffgang Gschaiter lying in his bed. The text explains how this man, after suffering unbearable pain to his left arm and back for three days, found himself completely paralyzed. For fifteen years, the print tells us, he was only able to move his eyes and tongue. The purpose of this paper is to collect donations and charity money, and the readers are invited to pray for him in the nearby church of the Three Saints in Dreiheiligen.

This pamphlet is interesting for several reasons: in the text, disability is explicitly described as a “mirror” of the observer’s own misery, therefore establishing the idea that one must think of himself as he is watching it; a distinction is made between body and soul to reinforce drama (the carpenter’s soul can be saved, his body cannot); the expression “poor cripple” is recorded for the first time.
But most of all this little piece of paper is one of the very first examples of mass communication in which disability is associated with the idea of donations, of fund raising. Basically what we see here is a proto-telethon, focusing on charity and church prayers to cleanse public conscience, and at the same time an instrument in line with the Counter-Reformation ideological propaganda (see V. Schönwiese, The Social Gaze at People with Disabilities, 2007).

During the previous century, another kind of gaze already developed: the clinical-anatomical gaze. This 1538 engraving by Albrecht Dürer shows a woman lying on a table, while an artist meticulously draws the contour of her body. Between the two figures stands a framework, on which some stretched-out strings divide the painter’s vision in small squares so that he can accurately transpose it on a piece of paper equipped with the same grid. Each curve, each detail is broke down and replicated thanks to this device: vision becomes the leading sense, and is organized in an aseptic, geometric, purely formal frame. This was the phase in which a real cartography of the human body was developed, and in this context deformity was studied in much the same manner. This is the “astonished and medical gaze“, which shows no sign of ethical or pitying judgment, but whose ideology is actually one of mapping, dividing, categorizing and ultimately dominating every possible variable of the cosmos.

In the wunderkammer of Ferdinand II, Archduke of Austria (1529-1595), inside Ambras Castle near Innsbruck, there is a truly exceptional portrait. A portion of the painting was originally covered by a red paper curtain: those visiting the collection in the Sixteenth Century might have seen something close to this reconstruction.

Those willing and brave enough could pull the paper aside to admire the whole picture: thus the subject’s limp and deformed body appeared, portrayed in raw detail and with coarse realism.

What Fifteen-Century observers saw in this painting, we cannot know for sure. To understand how views are relative, it suffices to remind that at the time “human marvels” included for instance foreigners from exotic countries, and a sub-category of foreigners were cretins who were said to inhabit certain geographic regions.
In books like Giovan Battista de’ Cavalieri’s Opera ne la quale vi è molti Mostri de tute le parti del mondo antichi et moderni (1585), people with disabilities can be found alongside monstruous apparitions, legless persons are depicted next to mythological Chimeras, etc.

But the red paper curtain in the Ambras portrait is an important signal, because it means that such a body was on one hand considered obscene, capable of upsetting the spectator’s senibility. On the other hand, the bravest or most curious onlookers could face the whole image. This leads us to believe that monstrosity in the Sixteenth Century had at least partially been released from the idea of prodigy, and freed from the previous centuries superstitions.

This painting is therefore a perfect example of “astonished and medical” gaze; from deformity as mirabilia to proper admiration, it’s a short step.

The Middle Path?

The admiring gaze is the one I have often opted for in my articles. My writing and thinking practice coincides with John Waters’ approach, when he claims he feels some kind of admiration for the weird characters in his movies: “All the characters in my movies, I look up to them. I don’t think about them the way people think about reality TV – that we are better and you should laugh at them.

And yet, here we run the risk of falling into the opposite trap, an excessive idealization. It may well be because of my peculiar allergy to the concept of “heroes”, but I am not interested in giving hagiographic versions of the life of human marvels.

All these thoughts which I have shared with you, lead me to believe there is no easy balance. One cannot talk about freaks without running into some kind of mistake, some generalization, without falling victim to the deception of colored glasses.
Every communication between us and those with different/disabled bodies happens in a sort of limbo, where our gaze meets theirs. And in this space, there cannot ever be a really authentic confrontation, because from a physical perspective we are separated by experiences too far apart.
I will never be able to understand other people’s body, and neither will they.

But maybe this distance is exactly what draws us together.

“Everyone stands alone at the heart of the world…”

Let’s consider the only reference we have – our own body – and try to break the habit.
I will borrow the opening words from the introduction I wrote for Nueva Carne by Claudio Romo:

Our bodies are unknowable territories.
We can dismantle them, cut them up into ever smaller parts, study their obsessive geometries, meticulously map every anatomical detail, rummage in their entrails… and their secret will continue to escape us.
We stare at our hands. We explore our teeth with our tongues. We touch our hair.
this what we are?

Here is the ultimate mind exercise, my personal solution to the freaks’ riddle: the only sincere and honest way I can find to relate diversity is to make it universal.

Johnny Eck woke up in this world without the lower limbs; his brother, on the contrary, emerged from the confusion of shapes with two legs.
I too am equipped with feet, including toes I can observe, down there, as they move whenever I want them to. Are those toes still me? I ignore the reach of my own identity, and if there is an exact point where its extension begins.
On closer view, my experience and Johnny’s are different yet equally mysterious.
We are all brothers in the enigma of the flesh.

I would like to ideally sit with him  — with the freak, with the “monster” — out on the porch of memories, before the sunset of our lives.
‘So, what did you think of this strange trip? Of this strange place we wound up in?’, I would ask him.
And I am sure that his smile would be like mine.

Death 2.0

Considerations about death in the age of social media


Take a look at the above Top Chart.
Blackbird is a Beatles song originally published in the 1968 White Album.
Although Paul McCartney wrote it 46 years ago, last week the song topped the iTunes charts in the Rock genre. Why?
The answer is below:

Italian articles about “daddy Blackbird”.

Chris Picco lives in California: he lost his wife Ashley, who died prematurely giving birth to litle Lennon. On November 12 a video appeared on YouTube showing Chris singing Blackbird before the incubator where his son was struggling for life; the child died just four days after birth.
The video went immediately viral, soon reaching 15 million views, bouncing from social neworks to newspapers and viceversa, with great pariticipation and a flood of sad emoticons and moving comments. This is just the last episode in a new, yet already well-established tendency of public exhibitions of suffering and mourning.

Brittany Maynard (1984-2014), terminally ill, activist for assisted suicide rights.

A recent article by Kelly Conaboy, adressing the phenomenon of tragic videos and stories going viral, uses the expression grief porn: these videos may well be a heart-felt, sincere display to begin with, but they soon become pure entertainment, giving the spectator an immediate and quick adrenaline rush; once the “emotional masturbation” is over, once our little tear has been shed, once we’ve commented and shared, we feel better. We close the browser, and go on with our lives.
If the tabloid genre of grief porn, Conaboy stresses out, is as old as sexual scandals, until now it was only limited to particularly tragic, violent, extraordinary death accounts; the internet, on the other hand, makes it possible to expose common people’s private lives. These videos could be part of a widespread exhibitionism/vouyeurism dynamics, in which the will to show off one’s pain is matched by the users’ desire to watch it — and to press the “Like” button in order to prove their sensitivity.

During the Twentieth Century we witnessed a collective removal of death. So much has been written about this removal process, there is no need to dwell on it. The real question is: is something changing? What do these new phenomenons tell us about our own relationship with death? How is it evolving?


If death as a real, first-hand experience still remains a sorrowful mystery, a forbidden territory encompassing both the reality of the dead body (the true “scandal”) and the elaboration of grief (not so strictly coded as it once was), on the other hand we are witnessing an unprecedented pervasiveness of the representation of death.
Beyond the issues of commercialization and banalization, we have to face an ever more unhibited presence of death images in today’s society: from skulls decorating bags, pins, Tshirts as well as showing up in modern art Museums, to death becoming a communication/marketing/propaganda tool (terrorist beheadings, drug cartels execution videos, immense websites archiving raw footage of accidents, homicides and suicides). All of this is not death, it must be stressed, it’s just its image, its simulacrum — which doesn’t even require a narrative.
Referring to it as “death pornography” does make sense, given that these representations rely on what is in fact the most exciting element of classic pornography: it is what Baudrillard called hyper-reality, an image so realistic that it surpasses, or takes over, reality. (In porn videos, think of viewpoints which would be “impossibile” during the actual intercourse, think of HD resolution bringing out every detail of the actors’ skin, of 3D porn, etc. — this is also what happens with death in simulacrum.)

Damien Hirst poses with his famous For the love of God.

We can now die a million times, on the tip of a cursor, with every click starting a video or loading a picture. This omnipresence of representations of death, on the other hand, might not be a sign of an obscenity-bound, degenerated society, but rather a natural reaction and metabolization of last century’s removal. The mystery of death still untouched, its obscenity is coming apart (the obscene being brought back “on scene”) until it becomes an everyday image. To continue the parallelism with pornography, director Davide Ferrario (in his investigative book Guardami. Storie dal porno) wrote that witnessing a sexual intercourse, as a guest on an adult movie set, was not in the least exciting for him; but as soon as he looked into the camera viewfinder, everything changed and the scene became more real. Even some war photographers report that explosions do not seem real until they observe them through the camera lens. It is the dominion of the image taking over concrete objects, and if in Baudrillard’s writings this historic shift was described in somewhat apocalyptic colors, today we understand that this state of things — the imaginary overcoming reality — might not be the end of our society, but rather a new beginning.

Little by little our society is heading towards a global and globalized mythology. Intelligence — at least the classic idea of a “genius”, an individual achieving extraordinary deeds on his own — is becoming an outdated myth, giving way to the super-conscience of the web-organism, able to work more and more effectively than the single individual. There will be less and less monuments to epic characters, if this tendency proves durable, less and less heroes. More and more innovations and discoveries will be ascribable to virtual communities (but is there a virtuality opposing reality any more?), and the merit of great achievements will be distributed among a net of individuals.

In much the same way, death is changing in weight and significance.
Preservation and devotion to human remains, although both well-established traditions, are already being challenged by a new and widespread recycling sensitivity, and the idea of ecological reuse basically means taking back decomposition — abhorred for centuries by Western societies, and denied through the use of caskets preventing the body from touching the dirt. The Resurrection of the flesh, the main theological motivation behind an “intact” burial, is giving way to the idea of composting, which is a noble concept in its own right. Within this new perspective, respect for the bodies is not exclusively expressed through devotion, fear towards the bones or the inviolability of the corpse; it gives importance to the body’s usefulness, whether through organ transplant, donation to science, or reduction of its pollution impact. Destroying the body is no longer considered a taboo, but rather an act of generosity towards the environment.

At the same time, this new approach to death is slowly getting rid of the old mysterious, serious and dark overtones. Macabre fashion, black tourism or the many death-related entertainment and cultural events, trying to raise awareness about these topics (for example the London Month of the Dead, or the seminal Death Salon), are ways of dealing once and for all with the removal. Even humor and kitsch, as offensive as they might seem, are necessary steps in this transformation.

Human ashes pressed into a vinyl.

Human ashes turned into a diamond.

And so the internet is daily suggesting a kind of death which is no longer censored or denied, but openly faced, up to the point of turning it into a show.
In respect to the dizzying success of images of suffering and death, the word voyeurism is often used. But can we call it voyeurism when the stranger’s gaze is desired and requested by the “victims” themselves, for instance by terminally ill people trying to raise awareness about their condition, to leave a testimony or simply to give a voice to their pain?

Jennifer Johnson, madre di due bambini e malata terminale, nell'ultimo video prima della morte.

Jennifer Johnson, mother of two children, in her last video before she died (2012).

The exhibition of difficult personal experiences is a part of our society’s new expedient to deal with death and suffering: these are no longer taboos to be hidden and elaborated in the private sphere, but feelings worth sharing with the entire world. If at the time of big extended families, in the first decades of ‘900, grief was “spread” over the whole community, and in the second half of the century it fell back on the individual, who was lacking the instruments to elaborate it, now online community is offering a new way of allocation of suffering. Condoleances and affectionate messages can be received by perfect strangers, in a new paradigm of “superficial” but industrious solidarity.
Chris Picco, “daddy Blackbird”, certainly does not complain about the attention the video brought to him, because the users generosity made it possible for him to raise the $ 200.000 needed to cover medical expenses.

I could never articulate how much your support and your strength and your prayers and your emails and your Facebook messages and your text messages—I don’t know how any of you got my number, but there’s been a lot of me just, ‘Uh, okay, thank you, um.’ I didn’t bother going into the whole, ‘I don’t know who you are, but thank you.’ I just—it has meant so much to me, and so when I say ‘thank you’ I know exactly what you mean.

On the other end of the PC screen is the secret curiosity of those who watch images of death. Those who share these videos, more or less openly enjoying them. Is it really just “emotional masturbation”? Is this some obscene and morbid curiosity?
I personally don’t think there is such a thing as a morbid — that is, pathological — curiosity. Curiosity is an evolutionary tool which enables us to elaborate strategies for the future, and therefore it is always sane and healthy. If we examine voyeurism under this light, it turns out to be a real resource. When cars slow down at the sight of an accident, it’s not always in hope of seeing blood and guts: our brain is urging us to slow down because it needs time to investigate the situation, to elaborate what has happened, to understand what went on there. That’s exactly what the brain is wired to do — inferring data which might prove useful in the future, should we find ourselves in a similar situation.road-accidents

Accordingly, the history of theater, literature and cinema is full to the brim with tragedy, violence, disasters: the interest lies in finding out how the characters will react to the difficulties they come about. We still need the Hero’s Journey, we still need to discover how he’s going to overcome the tests he finds along the way, and to see how he will solve his problems. As kids, we carefully studied our parents to learn the appropriate response to every situation, and as adults our mind keeps amassing as much detail as possible, to try and control future obstacles.

By identifying with the father playing a sweet song to his dying son, we are confronting ourselves. “What is this man feeling? What would I do in such a predicament? Would I be able to overcome terror in this same way? Would this strategy work for me?”
The construction of our online persona comes only at a later time, when the video is over. Then it becomes important to prove to our contacts and followers that we are humane and sympathetic, that we were deeply moved, and so begins the second phase, with all the expressions of grief, the (real or fake) tears, the participation. This new paradigma, this modern kind of mourning, requires little time and resources, but it could work better than we think (again, see the success of Mr. Picco’s fund-raising campaing). And this sharing of grief is only possible on the account of the initial curiosity that made us click on that video.

And what about those people who dig even deeper into the dark side of the web, with its endless supply of images of death, and watch extremly gruesome videos?
The fundamental stimulus behind watching a video of a man who gets, let’s say, eaten alive by a crocodile, is probably the very same. At a basic lavel, we are always trying to acquire useful data to respond to the unknown, and curiosity is our weapon of defense and adaptation against an uncertain future; a future in which, almost certainly, we won’t have to fight off an alligator, but we’ll certainly need to face suffering, death and the unexpected.
The most shocking videos sometimes lure us with the promise of showing what is normally forbidden or censored: how does the human body react to a fall from a ten story building? Watching the video, it’s as if we too are falling by proxy; just like, by proxy but in a more acceptable context, we can indentify with the tragic reaction of a father watching his child die.

A weightlifter is lifting a barbell. Suddenly his knee snaps and collapses. We scream, jump off the seat, feel a stab of pain. We divert our eyes, then look again, and each time we go over the scene in our mind it’s like we are feeling a little bit of the athlete’s pain (a famous neurologic study on empathy proved that, in part, this is exactly what is going on). This is not masochism, nor a strange need to be upset: anticipation of pain is considered one of the common psychological strategies to prepare for it, and watching a video is a cheap and harmless solution.

In my opinion, the curiosity of those who watch images of suffering and death should not be stigmatized as “sick”, as it is a completely natural instinct. And this very curiosity is behind the ever growing offer of such images, as it is also what allows suffering people to stage their own condition.

The real innovations of these last few years have been the legitimization of death as a public representation, and the collectivization of the experience of grief and mourning — according to the spirit of open confrontation and sharing, typical of social media. These features will probably get more and more evident on Facebook, Twitter and similar platforms: even today, many people suffering from an illness are choosing to post real-time updates on their therapy, in fact opening the curtain over a reality (disease and hospital care) which has been concealed for a long time.

There’ll be the breaking of the ancient Western Code / Your private life will suddenly explode, sang Leonard Cohen in The Future. The great poet’s views expressed in the song are pessimistic, if not apocalyptc, as you would expect from a Twentieth century exponent. Yet it looks like this voluntary (and partial) sacrifice of the private sphere is proving to be an effective way to fix the general lack of grief elaboration codes. We talk ever more frequently about death and disease, and until now it seems that the benefits of this dialogue are exceeding the possible stress from over-exposure (see this article).

What prompted me to write this post is the feeling, albeit vague and uncertain, that a transition is taking place, before our eyes, even if it’s still all too cloudy to be clearly outlined; and of course, such a transformation cannot be immune to excesses, which inevitably affect any crisis. We shall see if these unprecedented, still partly unconscious strategies prove to be an adequate solution in dealing with our ultimate fate, or if they are bound to take other, different forms.
But something is definitely changing.