The Smell of Death: Interview with Nuri McBride

The field of death studies is fascinating for many reasons, but what excites me is how multifaceted and diverse it is — a true mirror of all the issues that also affect life.
In fact it’s obvious, when you think about it, that such a universal event should fall in one way or another into every area of academic study: among the many scholars I have known over the years, there are those who study death in relation to education, to politics, end-of-life ethics, psychology, art history, anthropology, archeology, gender, discrimination, entertainment, and so on.

Even knowing the richness of this branch of studies, I was nonetheless struck when I first met Nuri McBride in Winchester in 2017, as part of the Death & the Maiden conference, because her field of research is something I could never have even imagined.

Nuri is a perfumer by profession, and from an academic point of view she studies the history of aromas and their relevance within cyclical or transitional rites. Her Death/Scent project explores the relationship between death rituals, smells and perfumes: founded in 2016, the website is a treasure trove of surprising information that testifies to how much the olfactory dimension is often overlooked when examining the declinations of a certain culture.

Some examples of covered topics? Osmogenesis, or the supernatural aromas emanating from the bodies of the saints; rebozo de luto, the Mexican mourning shawl carrying an unmistakable scent which fades over time but never completely disappears, just like the pain of loss; the importance of essences in Egyptian embalming; the role of smell in the philosophical debate on the erotic and “bestial” nature of human beings, and its effects on women — good girl perfumes vs. prostitute perfumes.

Another ingredient of her approach is the constant focus on human and workers’ rights, on class disparities, on power equity and inclusiveness, on issues relating to colonialism. These concerns, as you will see by reading below, are related to the life experiences that Nuri has chosen; her entire path, from her career in the resettlement of refugees and torture victims to her joining a Chevra Kadisha (Jewish burial society), is intertwined with the activity of olfactory cultural education, making her voice one of the most acute, sensitive and original in circulation.

Some time ago Nuri interviewed me for her Aromatica De Profundis newsletter; since her questions are of rare intelligence, it ended up being one of the most beautiful and intense chats of my whole career (here it is). So I thought I’d ask her to return the favor, and tell us something about her life and her very special research.

It is understood that those three or four lines in a speaker’s bio are always an approximation, a summary that cannot really contain the complexity of a person’s experiences. But I remember the first time I looked at your bio I had to go back and double check: I was astonished and in admiration, because I felt like I was reading ten lives in one – and what’s more, all of them were light years away from my experience.

For example, you spent twelve years in Kenya, Thailand, Israel and the United States working on the resettlement of refugees. What impact did that long experience have on your way of seeing the world?

Oh, thank you, that is so kind to say. Believe me, it was far less glamourous than it might sound.
My time working in refugee resettlement and torture treatment shaped me in many ways. I walked into my first job a Pollyanna that believed in the power of the law to fix things. I walked out of my last one partly deaf, with a limp, and a complete distrust in the current international system to preserve human rights.

That sounds very cynical, and it is, but it’s the truth. The system around refugee aid is filled with well-meaning and hardworking people that believe in the mission, but the system isn’t designed actually to help refugees in real and tangible ways. It is intended to contain them. Keep them alive, sure, but keep them out of developed economies as much as possible. We warehouse them in middle-income countries that can’t physically stop them from crossing the frontiers but can relegate them to camps for decades.

That’s why in places like Kenya and Thailand, we see generations of refugees born and living their whole lives essentially in prison. They can’t go home, only 0.05% will be resettled in the West, and they are blocked from assimilating into the local community. They are caught endlessly in No Man’s Land.

You can have the best intentions to help people but end up part of a system of harm. I quit the day I felt I was doing more harm than good for my clients.

I still believe in people, though. People are what makes the difference. My clients were some of the most resilient people on the planet. I saw such grace and generosity from folks that had so little themselves but gave freely to others. Despite it all, I still believe that our natural inclination is towards taking care of each other.

This work also took away the veneer of stability I thought existed. No one sees a blue tent in their future. One of my early co-workers, a former refugee, told me the story of her flight from Yugoslavia when she was a kid. She was sent home early from school one day, and as she opened the door, her father picked her up and just started running. That was it. She never returned. Your life can change instantly, and most of us are not as safe as we think. Push the cards of fate a little one way or the other, and any of us could end up as one of the invisible people, whether becoming a refugee or just falling through the cracks of your own society.

So, I keep three passports even though it’s an absolute pain. I keep a jump bag in my closet. I drill my family on rally points and registering with the Red Cross. That way, should a disaster happen and we get separated, I can find them. I’m pretty sure I wouldn’t do any of those things without my time in aid work.

I imagine becoming a Metaheret [traditional Jewish figure charged with ritually washing and preparing the dead, as well as assisting in funeral preparation and mourning] was another crucial step for you. What prompted you to take this path?

Choosing to join the Chevra was a way of dealing with the guilt of leaving refugee services actually. I knew it was the right thing to do, but I felt I had let many people down.

I had family and friends that were Metaherim, and they thought I would be good at it, so they asked me to join. I took to it reasonably well. I think we all have our callings, and this one was mine. Selfishly, it has been very healing to be of service.

In the death-positive community, it’s often said that over the last century there’s been a ‘social removal of death’, and one of the causes is usually identified in the secularization of society, in the absence of specific rituals that could bring mourning back into a known and accepted dimension. In this view, the absence of rites is believed to parcel out the experience of death, by unloading the burden of mourning on the individual; grief therefore can become unbearable as it is no longer shared with the community.

All these ideas are actually quite questionable – and in fact they have been criticized by serious scholars, who consider them groundless and even, in some cases, vaguely reactionary (as they’re not very far from the narratives that call for a return to a golden tradition or a mythicized past).

Your work as Metaheret is part of a ‘rule’, within an Orthodoxy that is however alive and well; in your experience inside a Chevra, how does modernity interact with the traditional aspect?

I share many of those same critiques of death-positive programming. However, I would say that there is a hyper-focus in death-positive spaces on postmodern lifestyle fulfilment through neoliberal individualization.

That is to say that death-positivity creates an environment where followers feel they will obtain some kind of benefit if they, as individuals, go out of their way to arrange and buy the perfect funeral/ritual that reflects their values and personality. It is implied that if they do this, they will achieve some type of peace or salience that would be denied to them otherwise. There is a massive focus on the aesthetics of dissent from Western commercial death, but no real challenge to the system of for-profit deathcare.

Surprisingly this individualization is often given credence by dressing it as community and postmodern ritual. However, DP doesn’t really deliver on these fronts. The onus is still on the individual to educate themselves, arrange everything, hire professionals or do the work. It puts more burden on the person, not less.

Nor do I see many in these spaces promoting any fundamental modality changes that would serve the greater good of the general public. These are things like protocols to improve conditions when dying in hospitals, developing accessible community resources and aid, or universal deathcare. It’s not that these things aren’t happening. These are all things we fought for and won in Israel for instance. They are just rarely being discussed in DP spaces.

I engaged with death-positivity in the early days, hoping to help them gain access to the vast political and social activism that has allowed traditional Jewish deathcare to thrive worldwide, even under extremely hostile conditions. There are many things to be learned that can be adapted to all kinds of communities. Instead I got met with a lot of people more interested in selling stuff than in community work.

If you want to say this is a progressive community movement, then the focus needs to be on universal harm reduction, not hocking mushroom suits and wicker caskets with the middle-class fantasy that everyone will be able to have these lovely bespoke deaths at home.

I often get offended by how Jewish Death is presented in these spaces. While DeathPositivity/Green Death adopts a similar aesthetic to traditional community care, their actions are diametrically opposed to the foundations of Jewish death practices, which are inherently anti-Capitalist. It is a sin in Judaism to profit from the dead!

Jewish death practices have changed over time and need to be adaptive to the community and the environment. So even though modern Jewish burial is built on a solid historical and halakhic foundation, it still has to meet the needs of real everyday people. The idea that we just do things based on TRADITION and don’t even know why we do them is inaccurate. We aren’t stuck in the past; we don’t have that luxury.

Instead, we are always trying to align our history with our present. How do we preserve what it means to be us and deal with the problems of modern life in a world that can be very hostile to us? How do we do that without losing ourselves or having our culture become a museum?

There are areas where we can compromise and areas where we can’t, but there isn’t a sense that everything was better in ‘ye olden days’. I’ve never seen a Jew pine after the days when we kept the bones of our dead in ossuaries stored in the walls of our homes. Returning to those older traditions isn’t inherent to Judaism. They won’t make grief any more supportable or make community deathcare any more accessible, so why do it?

You were part of a Haredi community, before moving to a less strict form of Orthodoxy. Was it a traumatic transition? And what is your relationship today with Orthodoxy?

Oh wow, no one has ever asked me this before.
There are several different flavours of what gets called Ultra Orthodoxy. I was Haredi (observers of religious law), but I was never Hasidic (part of the mystical Hasidic Movement). My people are Maskilim (followers of the Haskalah or Jewish Enlightenment Movement).
I know it all looks like a bunch of dudes in funny black hats to the outside, but there are pretty significant differences between them. This is to say, things were easier for me than for others.

I’m not going to sugarcoat it. If you grew up Hasidic, especially in the Diaspora, you went to Hasidic schools and only spoke Yiddish; leaving the community is very hard. It also depends on your family and support network. The former Sephardic Chief Rabbi of Israel has a secular gay grandson, and he is there in all the family photos alongside the rest of them.

For me…were people disappointed – yes. Did people stop talking to me – some did. Did I hear, “You should have married a nice rabbi, and instead you chose crush an old woman’s dreams”- oh boy, did I ever!

But I just held the line that I’m not changing; their idea of me was what was changing. I’m not going anywhere. I’m still the same person. I am a Jew now, and until the day I die, whether or not I cover my hair as a married woman.
I left, but I’m not gone, if that makes sense. I still take up space in that world whether they like it or not. It is part of my birthright too. Not everyone is happy about that, but oh well. As the kids say these days, they can die mad about it. I still love them, though.

Does the Jewish ceremonial always have a normative approach, made up of laws, of things allowed and forbidden, licit and illicit, in which there is inevitably a right and a wrong way even to die? Or is it something more elastic, which changes over time and situations? More specifically, what do you like about it and what do you think should change?

As I said before, there is always an element of negotiation that makes our path relevant in the modern age. There are areas where we can move on things, but you can’t start negating Torah, then it stops being Judaism and becomes something else. You don’t have to like a commandment, you may not follow a commandment in your own life, but you can’t just strike it off. We were given 613 commandments. That number doesn’t change; how we navigate them does.

Judaism is grounded in the fundamental belief that halakha is normative and binding to the Jewish people, but halakha isn’t just religious jurisprudence. It draws heavily from aggadic and mystic texts, exegetic commentary and the Torah to present not just a ridged legal framework of normative behaviour but a method of inquiry and discourse that defines Jewish life.

The most important learning you do in seminary is with your chavruta (a study partner/group), debating various opinions in the Talmud. Everything is subject to debate, analysis, and discourse. That’s what I love most, I think.

Jacob became Israel after he wrestled an angel. We call the entirety of the Jewish people Israel after him because we want to create an environment where we have the mental strength and acuity to wrestle with angels.

I am fascinated by how much funeral customs are a reflection of how we imagine death. For instance, in a beautiful article about your work as Metaheret, you recounted how carefully you proceed and how many precautions you take in order to respect the deceased person:

Once you are in the care of the Chevra Kadisha we will always use your name, you will always be a person, you will never be an object. […] A three-person Taharah team will work in silence (except for softly whispered prayers), with intense concentration, as they meticulous prepare your body. At the end, they pray for your forgiveness if they have offended you in their preparation.

I don’t think I’ve ever felt truly offended in my whole life, so I sure hope I won’t became pettish once I’m dead; but asking the deceased for forgiveness means that being dead – what you envision being dead will be like – certainly includes this possibility. As opposed, for instance, to the Buddhist idea that in the moment of death we may get to a pristine awareness and see things as they are, from a broader perspective than the human mind allows, finally free from the Self, from names, forms and cognitive biases (Chönyi bardo); as opposed to the idea of the dead not being there at all (as in the modern secular view).

So I’m curious: do you look at your work more as a way of comforting the living, or the dead themselves?

Both are equally important; it’s mostly about timing. When a person dies, it is my duty to protect them and care for them. After the dead person is buried, all of our attention goes to comforting the mourners.

Jewish culture has a low tolerance for liminal spaces. So every second a dead person is not buried, they are, in a sense, in danger. Until they’re safe in the ground, they are the priority above everything else. And we do treat them as if they were alive. We call them by their names; we tell them what we are doing or what is happening. Someone is always with them until burial. We comfort them, of course. It never even occurred to me not to.

When I said we ask for forgiveness for offending them, I don’t mean petty personal offence. I had an examination table break once, and the body fell on the floor. This is a desecration of the dead. The whole team cried our eyes out. We intellectually knew the body felt no pain, but emotionally we hurt them, we dishonoured them. Our job was to keep them safe in this liminal time, and we failed to protect them.

In atonement, we fasted for 40 days (ate one meal in the evening). It’s the same restitution for dropping a Torah scroll. There is this harrowing moment in the Shabbat service called Hagbah where the open scroll is lifted over the reader’s head. If he drops it, everyone present does the fast. There doesn’t need to be a conscious entity that is offended; a sacred thing has been harmed, and harm requires action to put it right.

I don’t know if any part of us survives after death, but even on the off chance it does, I’d like to know someone is there looking out for me that way.

Let’s move on to your perfume work. How did this passion start?

When I was a girl, I loved to watch my grandmother sit at her vanity table and get ready for the day. It was magical with all her little pots and jars. I nagged my parents for weeks, and for my birthday, they got me a vanity table of my own along with a silver-plated comb and a bottle of Love’s Baby Soft perfume.
Baby Soft is a bright pink perfume that smells like baby powder. It had a creepy “sexy baby” ad campaign when it launched in the 70s, but my parents didn’t know that, it just seemed kid-appropriate. There was no way they would give me makeup, even play makeup, but perfume seemed okay.

I was also secretly obsessed with Miss Piggy. I had a sticker of her looking glamourous with a feathered boa that I hid on the inside of my toy chest. Now armed with my own womanly tools, I would sit there for hours combing my hair into a frizzy mess and spraying myself with this pink concoction, thinking, “I’m like my grandmother AND Miss Piggy now. I’m a WOMAN!”

It’s a silly story, but that’s when I learned the power that scent has to transform the way we feel about ourselves. It’s the only cosmetic you wear for your enjoyment as much as for others. It can be armour when you need it.

I was obsessed from that point out. I started saving my pocket money to buy cheap perfumes from the pharmacy. It became a hobby, but I never in my wildest dreams would have thought I would be doing what I’m doing today. I never saw anyone like me involved in perfume, so it seemed impossible as a career.

When I was a boy, it seemed to me that the sense of the sacred could be found anywhere except in church. I think my main problem was having to be part of a community, an idea I still recoil from; anyway, up to the age of 13 I was induced to go to Mass – not in a very regular way, but with a regular reluctance on my part.

Yet there was one exception (which I am sure you’ve already heard many times): I loved the rare moments when incense was used. Although incensing is, as far as I know, optional during any celebration of Mass, it was used very sporadically, and for this reason to my eyes – and my nose – it was a precious event. There was something deeply mysterious in the gesture of the priest who swung the thurible projecting the smoke towards the altar and the faithful, in those white spirals wreathing for a very brief instant the pages of the Book in a pale puff, in the air of the church saturated with the sweet scent, in the rising mist giving out unreal reflections.

How relevant is the liturgical use of incense or perfumes in the Jewish tradition? Is there any memory for you that binds perfume to the sense of the sacred, and that may have been a stimulus for your research?

There is something lovely about a thurible making its way through a church, isn’t it? I like it too.

Incense offerings used to play a considerable role liturgically during the time of the Temple. However, since the Temple was destroyed, it is forbidden to use any aromatics in a synagogue. A synagogue can never take the place of the Temple, and offerings can only happen at the Temple. You don’t even want to create an allusion to offerings in a shul. However, there is still a yeshiva in Jerusalem that teaches Cohanim to conduct the sacrifices. I guess just in case another temple falls from the Heavens, they will be ready with the showbread.

So for me, sacred smells are very domestic. They are the smells of getting ready for the Shabbat. It is baking bread, roasting chicken, and chraime, a spicy fish stew. It is soap and scenting our clothes over an incense braiser (domestic incense use is fine). It’s the particular waxy smell of Shabbat candles and the way new Borsalino hats smell. I guess it’s the smell of home. That feels sacred to me.

Perhaps due to the fact that we are daily assaulted by pollution and smog, we have sanitized the interior of our homes, purifying them of bad smells. I have a feeling that the latter have become more and more like a real taboo. But is this something that has always existed? Were there forbidden smells in past ages?

There have certainly been smells people didn’t like in the past, but the reality of life, particularly urban life, for most of human history meant you couldn’t avoid them. Then as now, however, you could always tell where the affluent lived in a city by how the air flows.
The wealthiest people had and have the sweetest air and best ventilation. The people living next to the garbage dump don’t have the power to keep those olfactory nuisances out of their neighbourhood.

The onset of the Black Death brought the prominence of Miasma Theory and the fear that rotting matter creates smelly gas that could infect your body and rot you from the inside out. This didn’t make malodours taboo like today, but it sure made people paranoid about them.
There were sweet plague preservatives like rose water that were supposed to protect you from miasmata. However, the most popular plague preservatives were acrid like vinegar, turpentine, gun powder, even stale urine. So clearly, folks were still okay with stink as long as it was the right kind of stink.

As far as forbidden, though, those tended to be pleasurable scents. Sumptuary laws often prohibited certain people from wearing or even buying certain aromatics or fragrances. Access to good smells was the only thing ever truly forbidden.

To me, the funniest proof that in modern times there’s a taboo regarding certain smells comes from a master of politically incorrect satire, an artist who throughout his career has systematically broken social prohibitions with sardonic irony and ‘good bad taste’. Of course I’m talking about John Waters, who invented the Odorama technique in 1981 to advertise his film Polyester.
At the entrance to the cinema, the spectators were given a postcard with ten plates to scratch in specific points of the film, indicated by a flashing number, in order to smell the scene represented on the screen. The first scent was the harmless and pleasant scent of roses, but then came more annoying odors such as the smell of flatulence, gasoline, skunk, unwashed feet. John Waters declared years later: “I actually got the audience to pay to smell shit!”

If there had been no taboo, Waters could not have broken it with his ‘delicious’ prank. But this experiment also makes me reflect on how neglected the sense of smell is, in favor of other senses, in the artistic field. Not just in cinema, which of course is an eminently visual art, but also in literary descriptions, in contemporary art galleries, in virtual/augmented reality technologies that strive to be more and more ‘immersive’ but often forget the olfactory dimension. Are there artistic or creative examples that go against the trend?

Honestly, I think we are on the cusp of a golden age where scent and the history of the senses are finally being taken seriously in academia. For a good 500-years, the academy has treated scent as this animalistic vestigial sense with little value to modern people. Darwin thought it would eventually be bred out of us altogether. I could write a whole book on Freud’s weird obsession with olfaction and sex.

Yet, the development of sensory history as a field of study has really changed things. I think that it will only develop with time and it is sprouting up all over the world. It is really diffused and exciting.

The artist and perfumer Bharti Lalwani has the project Bagh-e Hind where she is scent-translating Mughal garden-paintings. Dr Caro Verbeek is researching heritage odours and means of cultural preservation for odours. Dr Ishita Dey is studying smell and intimate space in domestic work in India. The new research institute Odeuropa examines how scent plays a role in European cultural heritage. OVR Technology is working on scenting virtual reality. Just last year, the Mauritshuis Museum put on the exhibition Smell the Art: Fleeting — Scents in Colour, which paired 50 17th-century paintings with corresponding fragrances; some of them were beautiful, and some were gross [autopsies included—Ed.]. It was all dictated by the composition of the work.

So it’s coming. It just hasn’t broken through to the mainstream yet.

What would be the advantages of a more widespread olfactory education?

Firstly, every community has a scent culture and heritage; it’s not just the south of France, as lovely as it is. Many aromatic modes were lost in the commercialization of cultural aromatics into the modern perfume trade because they couldn’t be commodified. These elements of culture and heritage deserve examination and exploration by academics and the people who inherited these cultures.

Humans are also not bad smellers. We have incredibly sophisticated and nuanced odour perception. Still, our ability to understand and communicate scent has been stunted by how we’ve trained people to use their olfactory senses. The work being done around smell, memory, and Alzheimer’s is really incredible for instance. These skills are valuable by themselves, but they also improve cognition and overall brain health.

You recently published a series of extraordinary essays on the relationship between perfumes and the plague (The Scented History of the Plague).
The comparison with the reality of the last two years is inevitable, including masks, paranoia, fear of breathing close to other people. How has the pandemic changed, or how could it change, our relationship with scent?

You know I had that series planned since the start of Death/Scent. I just didn’t expect it to launch right in the middle of a real-life pandemic.

I think the most significant change will be around anosmia (the loss/inability to smell). We all have experienced impaired smelling when suffering from a head cold. Still, I don’t think the average person understood what the total loss of their olfactory ability meant until this pandemic. I can’t think of another condition that has assaulted the olfactory bulb the way Covid-19 has. Millions of people have experienced temporary anosmia, and hundreds of thousands will have long term impairment.

Some people are born anosmic, and they seem to do fine, but when a scented person loses their ability to smell, it can be devastating. You lose contact with the world. Information and pleasures you didn’t even understand you were experiencing are gone. Food becomes flavourless, desire for sex decreases, even the ability to perceive danger decreases. Many people suffer a depressive episode after losing their ability to smell.

I think we will see a lot more research focusing on anosmia and smell training for those suffering from olfactory impairment. I think the fear of losing our sense of smell and what that could imply will be with us for a long time.

Here is Nuri McBride’s official website; you can follow her on Twitter and Instagram.

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.
Is
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.

Susan Tyrrell, la Regina del Weird

“L’ultima cosa che mia madre mi ha detto è stato, ‘SuSu, la tua vita è una celebrazione di tutto quanto ci sia di volgare e appariscente’. Mi è sempre piaciuta quella frase, e ho sempre cercato di vivere all’altezza.”

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Fra le icone che hanno marcato la storia del cinema weird, spicca incontrastata la grandissima Susan Tyrrell.

Attrice solidissima e versatile, dalla carriera teatrale di grande successo, debutta nel 1971 in Shoot Out, ma è con lo splendido Fat City (1972) di John Huston che arriva la celebrità: nel film Tyrrell interpreta Ona, una disperata “mosca da bar” persa fra fallimenti e alcolismo, e la sua intensa performance le vale una nomination all’Oscar.

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Dopo questo inizio “d’autore” Susan decide però di sterzare la sua carriera e, folle e determinata com’è, comincia a inanellare una serie di ruoli estremi, deliranti e talvolta smaccatamente sgradevoli. Uno dei film che hanno per sempre segnato l’immaginario weird è Forbidden Zone (1980) di Richard Elfman (fratello del celebre compositore Danny, che per l’occasione scrisse la sua prima colonna sonora), in cui Susan Tyrrell interpreta istrionicamente Doris, la Regina della Sesta Dimensione, sposa di Re Fausto, un nano.

La sua personalità esuberante e sregolata la porta in seguito a interpretare Solly, la sboccata lesbica di ferro di Angel (1984) e Avenging Angel (1985). Data la sua passione per i personaggi volgari e di cattivo gusto, l’incontro con John Waters, il Duca del Trash, non poteva tardare. Diretta dal grande regista di Pink Flamingos, Susan compare nel classico cult Cry Baby (1990) nel ruolo di Ramona Rickettes, la disgustosa nonna di Johnny Depp.

All’inizio del 2000, però, una rarissima malattia del sangue la costringe, nel giro di un paio di giorni, ad avere entrambe le gambe amputate. Questo, ovviamente, non può fermare la nostra Susan – anzi per lei questo è nuovo motivo di forza espressiva, per ritagliarsi personaggi ancora più bizzarri ed estremi. Nel 2003 compare in Masked and Anonymous di Larry Charles, nel ruolo di una maga veggente.

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Donna selvaggia e granitica, ousider dichiarata, buffa e bizzarra, è sempre pronta a raccontare i più sordidi retroscena di Hollywood. E resta sempre, a testa alta, la più alta incarnazione femminile del cinema weird.

Sono una solitaria. Non mi piacciono le persone belle, ma trovo la bellezza nel grottesco”.

(Susan Tyrrell)