From Felipe Monteiro

In 2013, Nara Salles and I coined the term “differentiated bodies” not only to designate people with disabilities but also to transcend the stigma, affirming everyone’s right to have, inhabit, and perform a differentiated body. “Differentiated body” does not refer specifically to the medical and social models of disability. The medical model aims to discover the causes of a person’s disability and tries to normalize the person to make them socially acceptable, linking disability to misfortune, assigning “outsider” status to the unfortunate, a stigma that brings with it exclusion (see Goffman Reference Goffman1963).

I thought of the expression “differentiated body” when I was rejected from a dance class at the university in Maceió, the city where I was born and live. Alagoas, in northeastern Brazil, is a region still dominated by a culture of intolerance and indifference. Since then, I have used this term to counter the impossible “perfect body” standards ingrained in the society and culture I grew up in.

I am affected by severe progressive spinal muscular amyotrophy (SMA), a genetic neurodegenerative disease that affects the anterior horn of the spinal cord. A progressive degeneration of motor neurons occurs but does not affect the sensory, at least in my case. Due to the SMA and severe scoliosis, I have no autonomous locomotion. Because my muscles are atrophied, my hands and feet have a certain degree of deformity, and I have no strength to perform movements (tetraparesis). I use a noninvasive ventilation device intermittently, which helps to keep my lungs open and prevents the muscles responsible for breathing from being overloaded. I struggled for years to obtain sufficient funds to be followed by a multidisciplinary medical team—a doctor, a physiotherapist, a nurse, and a medical technician—to minimize the complications in my musculoskeletal and respiratory systems and allow me a certain margin of independence at home and in my professional environment. As we say in Brazil, they “treat me to really live not to live just to treat myself.”

Through scholarships and grants, I contended successfully for homecare when attending the university, as well as for my sister, who has a clinical condition similar to mine, although slightly less severe. However, I have suffered discrimination since I was a child. When I attended primary school, I was bullied by the nuns. I endured humiliation in silence. Because of the overall lack of accessibility within the buildings where I studied, including the university, I was excluded from almost every activity.

All my performances are autobiographical. I organize performative situations to make life and art converge by sharing my personal experiences with an audience, exposing the difficulties I encounter in my quotidian activities. I take over the performance space and expose my vulnerable body as a tool to stimulate a discussion about the marginalization of disabled people as a minority, a discussion I deem necessary for societal development. Through performance art, I can express my concerns about the hypocritical society where I live, which regards “the disabled” as a separate category of humans, an unwelcome problem to be relegated to the periphery. I assert that the display of explicit differentiated bodies in performance art (the body as it is) is a radical invasion of the domain of established social norms that are predicated on judging bodies like mine as unacceptable according to cultural body standards. My performances are insurgent acts, insubordinate presences in the folds of a reactionary system that ghettoizes disabled people. By bringing the derogatory situations I live in inside the performance space, I expose my vulnerability and apparent weakness as a form of artivism. I denounce what I see and experience as unjust. I discuss diversity as an opportunity for societal change. In so doing, I explore how my differentiated body is perceived and understood by others, questioning Otherness as “the result of a discursive process by which a dominant in-group constructs one or many dominated out-groups by stigmatizing a difference—real or imagined—presented as a negation of identity and thus a motive for potential discrimination” (Staszak Reference Staszak2009:2). I also view the aesthetics of invasion as a form of resistance against discrimination and as a way to praise the courage of performers with differentiated bodies who expose themselves publicly in order to express their concerns and defend their ideas, and eventually to be acknowledged not only for their disabilities but also for their art (Monteiro and Salles Reference Monteiro and Salles2018).

While studying Antonin Artaud and Jerzy Grotowski at the university, I realized that if I was going to perform, my actions had to address how the stigmatization process affects my differentiated body and my interpersonal relationships. Because I cannot move autonomously, I had to identify aesthetic parameters related to my clinical condition and within which I could performatively implement my ideas, exposing my body to the gaze of others. I wanted to raise awareness about the physical suffering caused by severe diseases and disabilities for which there is often no remedy, attempting a performative conversation between bodies in pain (as individuals and as artists) and audiences, the community, and society, without falling into clichés and victimhood.

For my first performance, I envisioned an imaginary dialog between my differentiated body and Mexican artist Frida Kahlo’s—I empathized with her polio, several surgeries, loneliness, and life story. I was also inspired by Oswald de Andrade’s 1928 Manifesto Antropófago, which proposes that Brazil’s cannibalizing of other cultures is its greatest strength and a way for the country to assert itself against European neocolonialism (Andrade [Reference Andrade1928] 1991:38–47). “The anthropophagic thinking combines a focus on the body, the passions and ideas of physical desire and aggression with cultural notions of hybridity and mixture, making the notion ripe for debates in contemporary organization theory” (Islam Reference Islam2015:351). I anthropophagically swallowed episodes of Kahlo’s biography looking for an antidote to the psychological ghosts that hinder me from exposing my body in front of an audience—my psychophysical limitations, the sudden and frequent attacks of tachycardia (a heart rate over 100 beats a minute), and my extreme anxiety.

I performed Kahlo em mim Eu e(m) Kahlo for the first time on 16 January 2013. The title translates as “Kahlo in me and me in Kahlo” and explains that I understand Frida Kahlo’s body as differentiated and that I undertake an anthropophagic dialog between me and her. I did not represent Kahlo mimetically. I weaved visual and narrative elements of our personal experiences to find a luminous trail to make clear my urgency to be considered equal to any other person. At the beginning of the performance, those who assisted me handed out 30 lanterns to spectators—their colors recalling Kahlo’s paintings. A projection of photographs of her life and works was screened on a canvas hanging above the mat, where I would later be placed, aided by some spectators. The canvas alluded to the mirror on the Mexican artist’s bed that she often used to paint her self-portraits.

I was costumed in different kinds of fabrics cut into asymmetrical shapes: yellow, black, white, and red cotton knitwear; green and blue ribbons and embroideries; gold glitter; yellow leather shoes with red laces—a tribute to the colorful long skirts Kahlo wore to highlight her cultural origins and hide her leg atrophied by polio. Through the projections and the light produced by the lanterns the spectators held, I intended to open up a shared dreamlike space. A lavender scent, generally used to calm newborn children, permeated the space—a bittersweet reference to the impossibility of Kahlo giving birth.

In the first part of the performance, I recounted episodes of my life: my birth, the DNA test and subsequent discovery of my illness, moments of my childhood and adolescence, the many hospitalizations, episodes of discrimination, a few friends at school, my passion for performance, art, and theatre. Soon after, I asked some spectators to help me out of the wheelchair and position me on the mat. They hesitated: How do we lift you up? Does it hurt? This established a dialog; the spectators took part in the performance. Most of them probably had no daily relationships with people with differentiated bodies, hence the initial hesitation of those who decided to help me and the astonishment of the others who just watched. Yes, I do feel pain. Yes, I am scared of inadvertently breaking any part of my body. I have already broken my arms and legs twice. But I must continue the performance.

The spectators put me on the mat. I depended entirely on them. I invited them to remove my costume until I was completely naked. I asked them to write with markers a word or a sentence on my body: What have you thought or felt when I was lifted and placed on the mat? What do you see when you see me naked, so close to you? Look, I can hardly move my hands… Words began to cover my skin: Fear, Bold!, Mind, Fragility, Courage, Apparent Fragility, To Help, Caution, Life, Brave, Different, We Are One Body!, Trusting, Careful, Wings Not feet, Different Body, Illusion, Faith, Strong, Beautiful, Beautiful Life, Victory, Freedom, Love, Made to Love, Kindness, Human Being, Perseverance, Happiness, Anguish, Strength, Fight, Baby, Difference, Affection, Willpower, Softness, Ashamed of Me, Spirals, Contortions, Respect, To Dream, People (fig. 5).

Figure 5.

Felipe Monteiro, Kahlo em mim Eu e(m) Kahlo. Espaço Cultural Linda Mascarenhas, Maceío, Brazil, 2013. (Photo courtesy of Felipe Monteiro)

Exposing my physical fragility and vulnerability and letting the audience interact directly with it by touch, did I subvert the sociocultural conventions that so much constrain our freedom to act? Did some spectators identify themselves with my differentiated body? Did they project something of themselves? Revealing my stigmas to the spectators’ gaze, did I transgress prejudices on disabilities and free myself from stereotypes commonly associated with it?

I involved the spectators as coauthors of a performance ritual, nurturing the need for proximity and interconnectedness. I gave them the chance to actively reflect on the marginalization and stigmatization that disabled people suffer. We are all incomplete but animated by the need to complete ourselves as human beings by entwining our hearts, as Frida Kahlo dreamed. My actions often depend exclusively on the spectators’ willingness to assist me. They exercise their responsibility in dealing with my defenseless body without injuring my body-in-pain.

I implemented my ideas of interactive, participatory performance with (Des)Vitruviando, one of the three performances I conceived in 2014, the practical part of my PhD at the Federal University of Bahia (Salvador). In (Des)Vitruviando, I compared my differentiated body in opposition to Leonardo da Vinci’s Vitruvian Man—my asymmetric corporeality challenging his model of harmonious proportion perfectly, and impossibly, fitting the square and the circle.

The performance occurred at the Cañizares Gallery, in a university building. A technician helped me make a square on the gallery floor with large sheets of white paper. Then he scattered several colored pencils the audience would use to outline my differentiated body on the paper floor. Or to scribble or write anything and, in so doing, engage with me.

Wearing only underpants, I then asked some spectators to take me in their arms and gently put me belly-up in the center of the paper square. Then I invited them to come closer and interact with my body. Only a few approached me. Ciane Fernandes, who leads the performance laboratories I attended, was the first to join. Then came Susanne Ohmann, a dancer and dance therapist who studied at the Folkwang Hochschule in Essen under the direction of Pina Bausch (fig. 6). As if alluding to aspects intrinsically linked to an inherent intimacy, we absorbed body shapes and signals from each other and started exploring the proportions and disproportions of our bodies in space. We experienced an affective reciprocity—a multiple, inclusive, emphatic improvisation of imperceptible movements and minimal touches, so that I could participate unassisted. The other spectators watched transfixed, making almost a ritual community, giving us their support silently. Somehow, I felt they shared my silent scream.

Figure 6.

Ciane Fernandes and Susanne Ohmann with Felipe Monteiro, (Des)Vitruviando. Galeria Cañizares, Universidade Federal da Bahia, Salvador de Bahia, Brazil, 2014. (Photo by Luis Carneiro Leão; courtesy of Felipe Monteiro)

About (Des)Vitruviando, Ciane Fernandes wrote:

I performed the other two performances outdoors as part of my PhD research in scenic arts at the Federal University of Bahia (Salvador, Brazil). Sanguis (Blood) was an outdoor hospital ritual metaphorically recalling the hospital’s visiting hour. It was a reframing of my several hospitalizations, my fear when I see the blood on the syringe’s needle when doctors and nurses give me an injection, and my rejection of medical gowns. I asked permission to color the fountain’s water in the university park with red food dye. I was forbidden to do so. So I chose a spot in the park to station my wheelchair. I installed a small table with surgical gloves, white gauze, needles, and a small sound system reproducing the sound of my heartbeats recorded during an echocardiogram. I asked the people who approached me to wear surgical gloves, take a needle, pierce one of my fingers, scribble with my blood on the white gauze what they wished, and light two incense sticks (fig. 7). Those who gathered around me were worried about the protocols. Those who had the courage to pierce my finger were hesitant, afraid of causing me unnecessary pain. Where should we prick? Where does it hurt the least? I perceived the disquiet and restlessness but also the empathy of the spectators. I tried to put them at ease as much as possible. The blood on the white gauze—a symbol, symptom, and backdrop of my reality—remained as the tangible evidence of the interaction between myself and the spectators.

Figure 7.

Felipe Monteiro, Sanguis, 2014. Video still. UFBA Theatre School (the park), Salvador de Bahia. (Courtesy of Felipe Monteiro)

I performed Sanguis not just to exorcise my fear of blood but also to raise a concern about the need to care for each other. I faced my disease self-sacrificially, offering my body and engaging the audience in a participatory act on my body—an act of mutual trust. After watching the video of the performance, French philosopher Sylvère Lotringer wrote me that I staged my reality in a public place in such a conflicted way that those who were there hadn’t the courage to walk away because I was genuinely performing my private theatre of cruelty publicly, leaving my transitory audience incapable of deciding if they witnessed something too lewd to be seen, or the ultimate act of bravery, which is my physical deterioration (Monteiro and Salles Reference Monteiro and Salles2018:265–66).

After Sanguis, I performed Reliquiarium Experientiis (Reliquary of Experience) in Salvador de Bahia at Largo de São Francisco, in the Pelourinho district. The performance was held in the central square before the San Francisco church where enslaved people were flogged and sold when Brazil was a Portuguese colony (1500–1822). Pelourinho is today the cultural heart of the city. The name means “pillory/whipping post” in remembrance of the cruelty of slavery.

I designed the performance sourcing from episodes of my life related to religion—my education by nuns, my past desire to become a priest, and my interest in Catholic art and the biographies of saints. I sat barefoot and motionless in my wheelchair for an hour, dressed in a costume similar to religious vestments. I placed a book in front of me and a small, red banner with the phrase “Write inside the book what you feel and/or think when you see me” (in Portuguese, English, French, and Spanish).

Only a few passersby wrote something in the book and signed it:

I exposed my disability in a public street to reveal my true self, to seek a link between art and life, to stimulate the gaze of the passersby, to show the value differences, and to transgress the stigmas and stereotypes associated with differentiated bodies. I was afraid because I spent one hour immobile, silent, and unguarded. Some people thought that I was a living sculpture and photographed me. Some others gave me coins, presuming I was begging. It made me feel how much the beggar is stereotyped. I sensed from people fleeting feelings of righteousness and compassion; and also a hypocritical guilt, maybe.

My last performance was in 2018. I was invited to perform a new work at FilteBahia Theatre Festival focusing on Artaud’s influence on Latin American contemporary performing arts, to celebrate the 70th anniversary of his death. I made O problema é porque sou lúcido?!, my most invasive work. The title is a question and an exclamation simultaneously, which in Portuguese means both “Is the problem because I am lucid?” and “The problem is that I am lucid!” I chose this title because sometimes I disagree with the care the professionals attending me at home give. They often want me to be docile and submissive. A while ago one of them said I am a problem because I am lucid and outspoken. Even though my differentiated body is deprived of locomotion, I still have my view of reality and a voice to express my thoughts and concerns, which, however, often is unheard.

In O problema é porque sou lúcido?! I laid motionless on a hospital stretcher, wearing only underpants and a tailored vest that Vivienne Westwood gifted me. I had unpretentiously written to her that I would have loved to perform wearing a costume designed by her. She sent me a T-shirt, a tailored vest, and an autographed book as a gift.

In the performance, I breathed through my bilevel positive airway pressure machine (BiPAP). This noninvasive ventilation device allows me to breathe and helps me open my lungs with air pressure when I cannot get enough oxygen and get rid of carbon dioxide. Unlike invasive mechanical ventilation, which connects to a tube in your throat, BiPAP delivers air through a mask on your face or nasal plugs connected to the ventilator.

Once again I used the sound of my heartbeat recorded from an echocardiogram (as in Sanguis) and a projection of photographs of meaningful moments in my life. I asked that the theatre’s foyer doors be left open, so the audience could enter and stay as long as they wished or leave whenever they wanted to. Some sat on benches and watched the projection, while others approached the stretcher to interact with me somehow. Some put their head on my chest to listen to my heartbeat and touched my hands gently. Brazilian performer Ciane Fernandes improvised a dance. French singer, actress, and storyteller Kaloune sang a capella while the spectators accompanied her, rhythmically clapping their hands (fig. 8). These unplanned, consensual, unmediated, interpersonal encounters with my motionless body created a togetherness. Once again, I performed against indifference. I deployed my differentiated body to shape the conversation about being seen as equal by others and, at the same time, to celebrate life.

Figure 8.

Kaloune and Felipe Monteiro in O problema é porque sou lúcido?! Teatro Martins Gonçalves da UFBA, 5 September 2018. (Photo courtesy of Felipe Monteiro)

Nicola Fornoni

Nicola Fornoni was born in Brescia, Italy, in 1990. His life has been marked by the diseases he suffered since childhood, progressively compromising his bodily functions and motor skills. He started performing in 2013, evoking and elaborating upon memories of his hospitalizations through symbolic objects such as gauze and lancets for measuring the sugar level in his blood.

For Fornoni, to perform is almost an abreaction to relive and overcome painful experiences that trouble him. For years he tried to avoid the word “disability” for fear it would become a label from which he would not be able to free himself—a term that, in his own words, rather than defining his situation precisely, dismisses it, limiting understanding of the particularities that make each person unique, whatever their clinical condition. However, in 2016, he felt the urge to contribute to the debate around the lack of accessibility for disabled people in historic Italian cities, which is the norm. He wanted to denounce the public administration in my city for doing nothing to solve this problem.

He asked his mother and a friend who is a videomaker to bring him to the underpass of the Brescia train station. He remained motionless in his wheelchair for seven hours. He hid his face behind a round mirror, like a mask (fig. 9). He did so because if any of the passersby approached him to ask what he was doing there, they would see their faces reflected, as if they were asking that question of themselves. His mother and friend stood quite far from him, so it looked like he was all alone. Recounting the experience, Fornoni says that some people wondered if he was real or fake, and others greeted him. Only a few of them dared to ask him to explain what he was doing there, curious to look beyond the mirror and see his face. No one offered to help him climb the stairs and get out of the underpass (Fornoni Reference Fornoni2023). Later, he titled the performance Nemo Propheta in Patria (No One Is a Prophet in Their Land).

Figure 9.

Nicola Fornoni, Nemo Propheta in Patria, 2016. Video still. (Courtesy of Nicola Fornoni)

For Fornoni, staying in the underpass, a transitory place-non-place, not seeing but hearing train noise and people’s shouts and voices nonstop, was tiring and alienating. Disengaging his gaze from the gaze of the others and sitting still for seven hours tested his endurance. After a few hours, his mind got clouded. “I felt confused, I lost of my capacity to perceive my surroundings. I experienced the separation people project when they come across a person in a wheelchair but do not see their face” (Fornoni Reference Fornoni2023).

Fornoni is affected by a severe form of scleroderma, which is a chronic, autoimmune, rheumatic disease that affects the body by stiffening the connective tissue. He has always resisted coming to terms with his disease, but he did so in the performance Fuckdermia in 2018. He stayed alone in a room, moving by means of an orthopedic walker for an hour and a half, with just a few breaks (fig. 10). While showing his physical fragility, he emphasized his struggle and resistance against the illness that afflicts him. He reacted and defeated it. He performed Fuckdermia shortly after discovering he could slowly walk again, aided by the walker. “Stand up, hold up, stay upright, walk” (Fornoni Reference Fornoni2023).

Figure 10.

Nicola Fornoni. Fuckdermia. Vaku Project Space, Bergamo, Italy, 2018. (Photo by Sofia Obracaj; courtesy of Nicola Fornoni)

Fornoni walked as a philosophical exercise, like Thoreau who began his lecture “Walking” this way: “I wish to speak a word for Nature, for absolute freedom and wildness, as contrasted with a freedom and culture merely civil,—to regard man as an inhabitant, or a part and parcel of Nature, rather than a member of society” ([1851] 1862).Footnote ⁴ He walked to praise his body because it allowed him to discover a new way of being and perceiving himself. He defied his profound fatigue to control his breathing, to balance his effort with repetition. The performance took place in a relatively small square room of the Vaku Project Space (Bergamo) in front of a limited number of spectators who could freely enter and exit the room or lean against the walls. Fornoni circled left and right, clockwise and counterclockwise—sometimes one round at a time and sometimes two. Periodically, he took a few steps and then sat for a moment on a chair placed in the corner of the room. Then he resumed the walking, a roundabout route like van Gogh’s 1890 painting, Prisoners’ Round, a walk of temporary relief.

In 2022 Fornoni analyzed his clinical condition using spoken words in two installations of UnderScars, a collective performance opera envisioned and devised by VestAndPage (Verena Stenke and Andrea Pagnes) in collaboration with Andrigo & Aliprandi (figs. 11 & 12). UnderScars grew out of Pagnes’s research project, “Islands Included: Inclusive Production Methodologies in the Performing Arts for Diversely-Abled Performing Arts Practitioners” (2022), supported by Fonds Daku (Germany).Footnote ⁵ For the performance, Fornoni transformed his afflicted body into an organic poetic membrane. Navigating with his wheelchair between dancers and acrobatic body moversFootnote ⁶ in a play of tender physical contacts and contrasting moving images, he invited spectators to reflect on the broader dimensions of existence through his two monologs.

Figure 11.

Nicola Fornoni and Marianna Andrigo in UnderScars, a collective performance opera by VestAndPage (Verena Stenke and Andrea Pagnes) in collaboration with Andrigo & Aliprandi. Forte Marghera, Venice, Italy, 2022. (Photo by Lorenza Cini; courtesy of VestAndPage)

Figure 12.

Nicola Fornoni and Marianna Andrigo in UnderScars, a collective performance opera by VestAndPage (Verena Stenke and Andrea Pagnes) in collaboration with Andrigo & Aliprandi. Forte Marghera, Venice, Italy, 2022. (Photo by Lorenza Cini; courtesy of VestAndPage)

Kamil Guenatri

Kamil Guenatri was born in Algiers in 1984. He moved to Toulouse at 17 to study mathematics and computer science. At the same time, he became interested in literature, particularly Arthur Rimbaud and Antonin Artaud; and artistic studies, especially performance and interventions in public spaces. Guenatri is affected by spinal muscular atrophy with low mobility of the limbs and suffers severe respiratory failure (similar to Felipe Monteiro). He uses a motorized wheelchair and needs 24-hour care. However, his clinical condition does not prevent him from performing at international art events.

Guenatri’s art mainly focuses on exploring his physical dependence on assistants to help him perform basic daily activities. Guenatri calls them “the privileged witnesses of my daily life” (2023:6), compensating for what he cannot do alone. He refers to his body as “a manufacturing plant of poetry and actions” (3). In his performances, his assistants manipulate his defenseless body and perform specific actions that Guenatri establishes before each performance. Yet, his assistants seem to abuse his body, which ethically contravenes the care keeper’s duty.

In the 2014 performance cycle Le drame d’un homme, the symbolism represents aspects of disability that are related to transferences and transformations of memories of pain and suffering. In the performance in Berlin, Guenatri decided to be deprived of his prostheses, placed on a table by his assistant and positioned below the support axis of his motorized wheelchair. His assistant covered Guenatri’s vulnerable body with rose petals, leaving his upper and lower limbs naked, exposed to the gaze of spectators. In the performance at Centre d’Initiatives Artistiques du Mirail (Toulouse, 2014), another assistant wrapped a spool of thread around Guenatri’s face (fig. 13).

Figure 13.

Kamil Guenatri. Le drame d’un homme. Centre d’Initiatives Artistiques du Mirail – La Fabrique, University of Toulouse, France, 2014. (Photo by Jérôme Carrié; courtesy of Kamil Guenatri)

Do we fall into an aesthetic hypnosis by watching Guenatri’s performances? Are they rituals of radical tenderness or cruelty? In an interview, Sarah Heussaff asked Guenatri: “Here, you are the free decider of these actions you impose on your assistants. It is like your mind inflicts these small, repeated acts of violence on your body through third parties. Can your assistants then be perceived as a physical demultiplication of your artistic thought?” Guenatri answered:

In Corpulences at KUB Galerie (Leipzig, 2014), another assistant cut lemons on Guenatri’s head, the stinging juice dripping into the performer’s eyes while he lay naked and motionless on a black mattress. In another part of the same performance, spectators were asked to take photographs of different parts of Guenatri’s body and then attach them to a wall underneath the phrase “THE HUMAN PERFECTION” (fig. 14). The purpose of Corpulences was to question and subvert ideals of physical perfection and beauty propagated by those who exclude people who do not fit those parameters. The photographs of parts of Guenatri’s body that were hung on the wall of the performance space created a new corporal form. As Guentari says:

Figure 14.

Kamil Guenatri, Corpulences. National Gallery of the Arts, Sopot, Poland, 2015. (Photo by Jurek Bartkowski; courtesy of Kamil Guenatri)

In 2015, Guenatri did Kamcel—perform the Other (Fiac, France) with German performance artist and body mover Marcel Sparmann (fig. 15). Guenatri described the work:

Figure 15.

Kamil Guenatri and Marcel Sparmann, Kamcel—perform the Other. Chapelle Saint Jacques Contemporary Art Center, Saint-Gaudens, France, 2015. (Photo by Lola Bernadi; courtesy of Kamil Guenatri)

The performance was the encounter between two different bodies (figs. 16 & 17)—the two performers considered the limits and communication between their bodies to create a performance dialog for the camera, entwining their imagination and embodying possibilities in different situations: public/private, inside/outside, and individually/together. Sparmann spoke of the experience this way:

For Guenatri, the image of the puppet and the puppeteer shows his kind of freedom: consenting to let another body manipulate his body. We are left with the thought that these abusive acts cause suffering. Still, for the French Algerian artist, pain is relative and symbolic; it arises mainly from fear, for the mind is the channel of all forms of bodily suffering. Guenatri wants to demonstrate that he is the free decider of all these actions that mishandle him. He looks at his body as a site of action and self-reappropriation—a blank canvas to fill, oscillating between movement and immobility, between full force and fragmentation. What mainly interests him is the body as a tool for visual composition. For example, in the performance cycle L’infini equilibre (2013–2016), inspired by Yves Klein’s anthropometries, Guenatri had spectators paint his whole body black (fig. 18). Guenatri explains:

Figure 16.

Kamil Guenatri in Kamcel—perform the Other. Kamil Guenatri and Marcel Sparmann. Chapelle Saint Jacques Contemporary Art Center, Saint-Gaudens, France, 2015. (Photo Lola Bernadi; courtesy of Kamil Guenatri)

Figure 17.

Marcel Sparmann in Kamcel—perform the Other. Kamil Guenatri and Marcel Sparmann. Chapelle Saint Jacques Contemporary Art Center, Saint-Gaudens, France, 2015. (Photo Lola Bernadi; courtesy of Kamil Guenatri)

Figure 18.

Kamil Guenatri, L’infini equilibre. Centre d’Initiatives Artistiques du Mirail – La Fabrique, University of Toulouse, France, 2014. (Photo by Jérôme Carrié; courtesy of Kamil Guenatri)

Furthermore

Performance and disability raise complex questions about the tension between the desire to show that people are all the same and the desire to expose us to their differences. What distinguishes performances by performers with differentiated bodies, pop TV shows featuring people with disabilities, events like the Paralympics, and old-fashioned “freak shows”? Are “freak shows” having a second life? What does the viewer see and receive? Is it voyeurism disguised as activist art?

In the 18th and 19th centuries, representations of disabled people were historically confined to the sideshow, the freak display. As Rosemarie Garland-Thomson analyzed in the introduction to her seminal Freakery: Cultural Spectacles of the Extraordinary Body (1996), the freak body, deviantly different, shown to entertain and amuse, becomes the other that serves to increase and comfort the “normal” identity of those who look at it, allowing the public to deny and suppress disagreeable aspects of their selves. In an era of social transformation and economic reorganization, the 19th-century freak show was a cultural ritual dramatizing the epoch’s physical and social hierarchy.

Today, performers with differentiated bodies affirm their differences. Live performances such as those discussed in this article and antidiscrimination legislation undermine the permission the old freak shows granted their audiences. We can no longer point, giggle, and forget. We are called to reflect on our own existence in relation to others who are different from us. The differentiated body breaks the rigidity of certainties about the body. This is true even in the face of popular culture and everyday obsessions: one’s image on social media often manipulated by filters to reduce what are considered imperfections, TV series that exalt beauty, the exponential increase in medical methods such as Botox and cosmetic surgery to “normalize” bodies, even the proliferation of closed-circuit cameras scanning all bodies.

The human body is a world of flesh. It is symbolically “a construction born of sensoriality filtered through our social and cultural condition, personal history and attention to the surroundings” (Le Breton 2017:2). It is a matrix of self-recognition and culturally anchored ways of interacting. The habit of gazing at disabled people is difficult to abandon. The medical gaze reads, interprets, and identifies bodily differences as abnormalities, which society in turn stigmatizes based on the hegemony of the gaze, leading to structural inequalities and systemic oppression. Often these are expressed as depression and illness on top of disability.

By performing their bodily differences and exposing their illnesses publicly, performers with differentiated bodies actively resist preconceived notions of illness that cast disabled persons as helpless passive individuals on whom others act and make decisions—medical personnel, caregivers, and family. Performers like Bufano, Monteiro, Fornoni, and Guenatri change the other’s gaze from pietism, mockery, or embarrassment into a profoundly human, nonhegemonic gaze. Their poetic revolt aims to overcome resistance to change and to find a new autonomy through that resistance.

Disability in the collective imagination is often an unseen or ill-defined presence that is therefore shocking. It places itself on the edge of consciousness between the known and the unknown, the perceived and the unperceived. Performers with differentiated bodies break down representational categories and, as a result of their will to act and be, destabilize the image of disability as a physical weakness or distant other. Disability does not fit traditional binaries and threatens to disrupt dominant, institutionalized knowledge that pigeonholes diversities into categories. Disability as represented by these artists points to unexplored terrain without precise contours, which few can comprehend.

If these performances were limited to addressing disability issues, their profound message would be lost. They would be static artistic operations. Instead, they should be read as incursions into the performative space generating original narratives that provide a mirror for a changing society.

The stigmatizing gaze resembles voyeurism: excitement and pleasure aroused exclusively by looking. To be a voyeur is considered unethical in terms of sexually deviant behavior. Some voyeurs also enjoy seeing people in distress. However, when taken as a research method, voyeurism connects many useful behaviors such as curiosity, the strong desire to know or learn something, and a sympathetic understanding of people. Voyeurism involves reflection and participation at a distance without disturbing the object investigated. In the cases offered here, the performer with a differentiated body, who with her or his presence affirms the vulnerability of life beyond the condition of ordinary social “reality,” embraces the dream and the newly created world. The artists discussed here perform rituals for life renewal in the Artaudian sense. They highlight vital energy as the basis of existence. It is also true that Artaudian magic—the idea of “organized anarchy” as a philosophy of experimentation and creativity to disrupt dogmatic rules and commonplaces (Artaud [Reference Artaud1938] 1958)—is seldom realized, especially when differentiated bodies are rendered harmless by media that reinforce stereotypes about disability.

In the relationship between disability and beauty, disabled people are linked to a form of “subversive sensualism” (Hahn Reference Hahn1988:28) that challenges traditional gender roles, stereotypes, and the idea that disability is a negative attribute that must be met with pity. When the vulnerability of the differentiated body is present and presses on the sensitivity of those close to bodies it is usually kept at bay by the label “disabled.” But in performance, the vulnerability (imagined and otherwise) of the differentiated body pairs with strength and resistance.

The encounter between spectators and a performer with a differentiated body is qualitative. The performer brings living energy; they are engaged in a journey between immediacy and mediation, art and everyday life. It is as if the eyes of the spectator gain a haptic function in addition to an optical one showing the distance between the extraordinary body and the average body. Thus, the encounter becomes an attempt to create a unified collective that strives to surpass ordinary detrimental labels regarding disability.

The artists presented here embrace their daily, physical, and existential discomfort in their performances as a tool to propose an alternative way of understanding social interaction. Despite the Artaudian cruelty of exposing their vulnerability onstage, their performances are vibrant, problematic, radical, and structural, undermining the traditional separations of the private and the political. However, for all that, the performances do not necessarily reposition disability in the reality shared by the abled and the disabled.

Disabled people are still unseen by most people—unable to participate in daily life, so essentially invisible. A major cause is the significant number of physical and social barriers that hinder their full integration into the public sphere and their continued lack of agency regarding their daily life experiences. Normalizing the social perception of disability and addressing negative attitudes, prejudices, and stereotypes is the most significant challenge that artists with disabilities face. Although an estimated 1.3 billion people experience significant disability, representing 16% of the world’s population—1 in 6 of us (WHO 2023)—media representation of people with disabilities is anchored in stereotypes and societal stigma.

Physical signs of difference related to disability cause prejudice, labeling, loss of status, and discrimination. Celebrations such as the International Day of Persons with Disabilities or World Down Syndrome Day usually receive only brief mentions in the media.Footnote ⁷ The occasional participation of people with disabilities in popular television programs and films is still news and often controversial. As important as it is to include disabled people as much as possible, it remains an open question if, for example, disabled fashion models shown as chic and exotic benefits the social integration of disabled people.

One might rightly argue that displaying disability as just another example of normal social variation in pop television programs and films is not realistic but an idealized expectation. What is needed instead is to support an accurate image of disability that strongly contrasts with the old visual rhetoric of the exotic, the wonderful, the pitiable, and the freakish. No disabled person asks to be considered and accepted as an exceptional exception but as someone equal and as worthy as all other people. Disabled athletes continue their fight to obtain equal rights. For example, 27-year-old fencing champion and multiple Paralympic medalist Beatrice “Bebe” Vio Grandis, similar to Lisa Bufano, contracted Type B Meningitis at age 11. The following year, her necrotized forearms and legs were amputated. After her second Paralympic gold medal in Tokyo 2020, she become brand ambassador, spokeswoman, and the New Global Face for L’Oréal Paris. In 2021, she brought the issue of disability to the European Parliament.

The problem is that the complexity of understanding and accepting disability is scarcely reflected in media representations that range from simplistic, cruel, and discriminatory frames anchored in stigma and stereotypes to more positive and motivating discourse that improves equality. The effective inclusion of people with disabilities in the public sphere, together with the normalization of the overall perception of their role in society and the progressive removal of stereotypes and stigma, depends to a large extent on the visibility provided by the media.

If disability is “a socially constructed definition of existence and nonexistence that is perpetually being redefined and re-enacted every day” (Bierdz Reference Bierdz2023:223), indeed, the question that lingers is whether performance can change “the dominant biomedical construction that affirms that the disabled body can be considered an aberration, and is imperfect and abnormal” (Santos et al. Reference Santos, Moreira and Gomes2020:3147).

Bufano, Fornoni, Guenatri, and Monteiro control their personal narratives when they perform. Their works reinforce the idea that disability does not limit one’s potential but can contribute to a cultural shift that embraces diversity and reflects the richness of the human experience. Their performances foster empathy and understanding among audiences. They enact the breakdown of societal barriers, increasing awareness of lives of the disabled and encouraging a more accepting and open-minded community. Performance allows spectators and audiences to actively participate in inclusive environments that create new opportunities for everyone.