“Everyone who is born holds dual citizenship in the kingdom of the well and the kingdom of the sick…sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”

When Susan Sontag wrote Illness as a Metaphor in 1978—from which these incisive words are drawn—she was undergoing treatment for breast cancer, and wanted to dissect the social politics of the public healthcare system she had encountered along the way. Challenging the victim-blaming rhetoric that was often used to describe those suffering from disease or chronic illness, the essay delivers a swift and critical blow to medical discourse of the time. Some 40 years on, these same words opened Misbehaving Bodies, a 2019 exhibition of works by Jo Spence and Oreet Ashery at London’s Wellcome Collection.

“Another Happy Day” from the series “Half-Light”, 2018 © Shahrzad Darafsheh

Spence, like Sontag, sought a creative outlet when diagnosed with breast cancer, frustrated with the abrasive clinical scrutiny of medical professionals—from doctors and surgeons to hospital photographers. She kept an intimate photographic record throughout her hospital experience—through invasive procedures such as mammography and mastectomy—and found herself shaken by what came back from the lab. “I couldn’t believe that I had seen so much and already forgotten it. I had already disavowed what had happened to me…This points up one of the advantages of photographing one’s traumas—before they become sealed over.”

Spence’s iconoclastic self-portraits are therapeutic exercises in self-reclamation, visualising her journey through the “other place” Sontag conjured. Tired of being reduced to the nameless status of ‘patient’, and of being told she was just the unfortunate victim of genetics, she demanded her body be seen as hers again. Reconfiguring cancer not as an enemy attacking externally, but as an intrinsic product of her own corporeal experience, Spence sought to maintain the autonomy of her body, crystallizing its various states in images.

“Keramiek met aantekening” from the series “La Machine”, 2018 - present © Phelim Hoey

Dutch artist Phelim Hoey is today preoccupied with similar concerns. Since being diagnosed with multiple sclerosis, Hoey has explored his condition through photography, film and sculpture. His ongoing project, La Machine, presents a series of visual experiments, combining the symbolic fragility of materials like porcelain with precariously-balanced still lives, each wrought with a pronounced tension. “For me, MS manifests itself primarily as pain, and whenever I feel a certain muscle spasm or sensation I automatically focus on it.” Measuring the body’s functioning is now a daily task which, in turn, his photographs reflect. “I use balance a lot in these pictures—some of them are based on traps used to catch wildlife, because it often feels like my body’s setting a trap for itself.”

“Candle” from the series “La Machine”, 2018 - present © Phelim Hoey

Where Spence saw a marked difference between the artistic and the medical body, Hoey observes a distinction between the physical body and the ‘self’: “After my diagnosis, I realised that I don’t see my body as something that’s really ‘me’ anymore.” Deriving inspiration from the motion studies of Eadweard Muybridge helped Hoey further underline this separation: “I like this way of focusing on the body: completely isolated in a space with no point of reference, and with no sense of its proportions. Bodies become objects in this way.”

“Muybridge 2” from the series “La Machine”, 2018 - present © Phelim Hoey

Hoey proffers that for those of us without visible illness or disability, the body is self-evident, facilitating a general autonomy of existence—the luxury of moving through society unchecked. For people with a visible health condition, who are perhaps used to being viewed in ways they cannot control, the photograph might offer a space to repossess how they are seen. In the hands of artists, with their added ability to construct the circumstances in which audiences access the work, the possibility of reclaiming the autonomy of self-image is further enhanced.

Bystander #14, 2016 © Mari Katayama

Japanese artist Mari Katayama explores similar ideas. Born with tibial hemimelia, a rare disease that prevents bones from growing in the lower limbs, Katayama had both her legs amputated at 9 years old. The artist also has a cleft left hand that she says resembles a crab’s pincer, hence the recurring presence of beach motifs throughout her photographs. For these images, Katayama makes body doubles, moulding and sewing limbs from leather skin, and styles herself and her prosthetic legs into a sort of living sculpture.

As Katayama explained in an interview with Dazed, her interest lies not in the body itself, but in “the gap of the ‘experiences’ throughout” it: “You can’t separate my body from my work, but I’m not making art out of my disabilities.” What Katayama posits, it appears, is that it’s possible to inhabit a body, to experience the implications of its ill health, and to make work that transcends that experience. First and foremost, these images are about the performance of identity and the things that shape it.

You’re mine #002, 2014 © Mari Katayama

Elsewhere, Iranian artist Shahrzad Darafsheh’s Half-Light presents a quieter, more reflective engagement with her battle with cancer. In book form, the project functions as a visual diary, recording a slew of everyday scenes alongside the more painful junctures of her journey. “Regardless of the type of illness, travelling through the image is one of the major processes to go into the body, and I wanted to examine myself inside and out. Nothing could really reveal to me how my body is changing better than photography, and shooting everything around me as well as myself helps me in being able to talk about my perception of illness both directly and metaphorically.”

“Half-Light” from the series “Half-Light”, 2018 © Shahrzad Darafsheh

The ongoing A Certain Distance project by Canadian photographer Philip LePage also adopts a diaristic approach, chronicling the artist’s account of living with mental illness. Diagnosed with dysthymia—a persistent and chronic form of depression—LePage examines his experience of this disorder alongside a constellation of associated conditions. In searing, dream-like black and white prints, he captures fragments of everyday life—the people he spends his time with and the places he goes.

Untitled from the series “A Certain Distance”, 2015 © Philip LePage

LePage describes the dissociative detachment incurred by his illness as if someone else is living his life—as if he is “becoming a ghost” of himself. Something about this spectral quality of experiencing illness resonates particularly with photography. “Before I was open about my condition, recurring comments about my work always used to centre on the idea that it seemed detached and viewers couldn’t get a sense of my story, but because of my illness that detachment is an inextricable part of me. When I began talking about it in relation to my work, the pictures started making more sense.”

Photography, it seems, offers artists like LePage a means to externalize parts of themselves that others may not understand. “You can’t take pictures of a broken mind, but you can show the pictures that mind makes, and maybe someone will recognize the symbols,” he says. While photography is undoubtedly a powerful tool with which to explore visible illness, it also maintains a capacity to represent the intangible—just as the body can misbehave in ways that aren’t immediately apparent.

Untitled from the series “A Certain Distance”, 2015 © Philip LePage

The work of Chinese photographer Shuwei Liu takes shape in similarly abstract forms, delivered in a spectrum of blues. Liu applied photography to process the impending decline of his vision, soon after floating crescents had appeared at the base of his corneas. Where English filmmaker Derek Jarman mused on the colour blue as “darkness made visible” as his own sight deteriorated, Liu considers blue “a space between the visible and invisible”, with photography offering a powerful tool for exploring that dichotomy. The milky, washed-out vision he was enduring is expressed in hazy images of foggy windows, eerily empty tunnels and moonlit landscapes.

Untitled, from the series “Visible Darkness”, 2015 – present © Shuwei Liu

When Spence grew tired of traditional medicine, she offered the following reason: “I have rejected a medical profession whose basic metaphors of disease are those of WAR: to cut, burn and chemically destroy the ‘problem’, to get rid of the ‘trouble’ (in my case a malignant tumour); to knife it out whilst not encouraging me to ask why it is there.” These metaphors are further probed in Project ‘K’, a photographic collaboration between Dutch artists Geert Broertjes and Lotte Bronsgeest, begun after Broertjes’ diagnosis with colon cancer in April 2019.

“Shortly after I was diagnosed, Lotte asked if she could take a portrait of me— something pure, without the presence of poisonous medicine in my body,” Broertjes says. As his treatment unfolded, the artist took daily self-portraits to study the nuances in his outward appearance. Meanwhile, the duo subjected negatives and prints to the same procedures Broertjes’ body was enduring. To represent chemotherapy, his urine was used to soak film rolls; partially burned negatives became stand-ins for surgical procedures; whilst 4x5 film was irradiated at the hospital—the hovering, illuminated square in the middle of the film symbolising Broertjes’ tumour of the same size.

Untitled from the series “Project ‘K’”, 2019 – present © Geert Broertjes and Lotte Bronsgeest

In Project ‘K’, the notion of a space beyond this one—of Sontag’s “kingdom of the sick”—arises once again. As Broertjes explains, replacing the human body itself with photographic film generates “a sort of external visualization of the world you live in as a patient.” The artist also highlights the contradictory character of ‘treatment’—that what is designed to heal you also breaks you down. In response, the practice of destroying negatives served to further emphasise the violence of both illness and ‘recovery’ on the body.

Untitled from the series “Project ‘K’”, 2019 – present © Geert Broertjes and Lotte Bronsgeest

A series of works by Kenyan-British artist Phoebe Boswell—brought together for The Space Between Things, a solo exhibition at London’s Autograph ABP—pose other pertinent questions. Why, when dealing with the experience of illness, must any account that isn’t ostensibly ‘strong’ be regarded as ‘weak’? And while there is much to be said for the therapeutic potential of art, why should creative explorations of ill or altered health always be redemptive and celebratory, or culminate in a ‘positive’ takeaway message?

After sustaining a serious eye injury, Boswell suffered a difficult emotional period that eventually led to a heart attack. Subsequently, a chasm widened between the artist and her sense of self, with prior understandings of her body undermined by it failing beyond her control. “How was she supposed to live, now, with a ‘new’ body and an emotional self that could never return to the person she once knew and inhabited?” asked writer M. Neelika Jayawardane, in a recent text on Boswell’s work for Aperture. The answer for Boswell lay in creating a dialogue with her new self, mediated through a form of art-making that embraced vulnerability and pain.

Film still from “Ythlaf”, 2018 © Phoebe Boswell

In one video work, Boswell incorporated multiple-exposure self-portraits of medical scans, from full-body shots to close-up views of her organs. In another—Ythlaf—the artist floats in the waters off Zanzibar’s shoreline, her body drifting metaphorically in and out of the frame, at the whim of outside elements. Boswell’s reflections reinstate that, beyond expressions of resolve, there should also be space for more painful and affecting representations of the vicissitudes of living with ill health.

Although the term ‘misbehaving’ seems to be a strangely insouciant one at first, it urges a critical consideration of the ‘norms’ from which the ill or suffering body deviates, as well as how society defines what we expect of our bodies. As Phelim Hoey reminds us, “society is ultimately for healthy people”—a feeling that connects the various accounts and conversations compiled here. For the lineage of photographers that, after Spence, have probed the capabilities and limits of their own misbehaving bodies, the medium maintains a transformative and emancipatory potential. Photography, ultimately, opens up a powerful space of rehearsal.

Untitled, from the series “Visible Darkness”, 2015 – present © Shuwei Liu

“I begin to see beneath the surface of the image,” reads a small slice of text in Spence’s seminal project, The Picture of Health?. “…I can now begin the work of re-inventing myselves.”

Editor’s note: This piece was written with the generous support of writer and editor George H. King.