Mary Grace Bernard
“While pain cannot be shared, its effects can be projected onto others such that they become the site of suffering.” – Amelia Jones
In Body Art Performing the Subject (1998), performance art scholar Amelia Jones explains that performance art is a practice that enacts the performer and viewers in passionate and convulsive relationships that “exacerbate, perform, and/or negotiate the dislocating effect of social and private experience in the late, capitalist, post-colonial Western world.” Performance art is an effective and affective art form. It is about the presence of the body and, in particular, the “Other’s” body: the (dis)abled body, the crip body, the queer body, and the female body. In this essay, I focus on the performances of Bob Flanagan and Johanna Hedva—two artists with these other bodies who reveal the bodily pain associated with their chronic illnesses to the public. While Flanagan takes a humorist and masochistic approach to revealing his pain, Hedva takes an auditory approach, covering their face with their hair, making eerie sounds through slow body movements, and yelling phrases that people with illnesses often hear such as: “If you reduce your stress, it would help a lot!” By performing the subject—in this case, their (dis)abled, chronically ill bodies—both artists expose their interior selves, specifically their bodily experiences,to their exterior selves, namely their identities. Flanagan and Hedva simultaneously display their bodies as art objects to spectators and establish a physical and emotional exchange between the performer and viewers. But while each artist reveals their body as personal and political, I concentrate on Flanagan’s ways of exhibiting the self and Hedva’s emphasis on displaying the political to show how each artist breaks down the binary that divides public and private space, art and life, performer and viewer, and body and mind.
Bob Flanagan was born in New York, New York, in 1952. When he was diagnosed with cystic fibrosis, doctors encouraged his family to move to an area with less moisture, better air, and calmer weather. So, his family moved to Los Angeles, California. Events from his childhood involving Catholicism and the sexual games he played with his cousins, in addition to his constant stomach cramping due to indigestion, ultimately shaped who he became as a sadomasochist and how he dealt with the chronic pain and suffering caused by cystic fibrosis. Flanagan was a writer and performance artist whose works primarily focused on sadomasochism and the effects of cystic fibrosis. He died of the illness in 1996, at the age of 43.
Johanna Hedva (born 1984) is a writer and performance artist who also grew up in Los Angeles. On their mother’s side, they are a fourth-generation Los Angelena. On their father’s side, they are also the grandchild of a woman who escaped from North Korea. Hedva explains that they live with a chronic condition that “about every 12 to 18 months, gets bad enough to render [them], for about five months each time, unable to walk, drive, do [their] job, sometimes speak or understand language, take a bath without assistance, and leave the bed.” As they describe in their essay “Sick Woman Theory” (2016):
Here is what has come to me: Endometriosis […] Bipolar disorder, panic disorder, and depersonalization disorder […] an autoimmune disease that continues to baffle all the doctors I’ve seen […] unimaginable fatigue, pain all over all the time, susceptibility to illnesses, [and] a body that performs its “normal” functions monstrously abnormally. The worst symptom that mine brings is chronic shingles.
Currently, they are based in Berlin, Germany because of the country’s more affordable and accessible healthcare system. In addition to their writings and performances, Hedva is also a sound artist and sometimes works in installation art (among other things). In order to make a living, they professionally read astrological birth charts and tarot, and they identify as a witch. The politics of disability, the crip community, and the anti-capitalist “sick body” are the key concepts and foundations of their writing, art, and daily life practice.
In The Disabled Body in Contemporary Art (2010), art historian Ann Millett-Gallant argues for the importance of (dis)abled artists who practice performance art since the latter is the “art form that most fully understands the potentials of disappearance, or invisibility, and offers the most means of exchange between the viewer and the spectacle.” In fact, when an artist makes their body the “(dis)abled subject” and object of an artwork, they are able to stare/gaze back at their viewers or audience. And as performers make spectacles of themselves, they gain agency in the power of self-representation by making the invisible visible—in the case of Flanagan and Hedva, by performing acts of pain in public. Flanagan and Hedva are not only able to make their invisible illnesses visible but create a type of sensory and bodily exchange between themselves and their viewers. Still, they take agency in the pain they experience on a daily basis as well.
Jones describes Flanagan as a poet who entered “the art world through performative sadomasochistic (S/M) practices in private S/M clubs in San Francisco and Los Angeles.” From his entrance in the 1980s, Flanagan began performing S/M practices in art galleries with his partner Sheree Rose. He would often read poetry or sing songs while performing acts of sadomasochism. One song in particular, “Super Masochistic Bob with Cystic Fibrosis” (1995), exhibits Flanagan’s humor and sadomasochism as ways to cope with cystic fibrosis. The artist made a point of engaging with his audiences and being likable. His humor and charm during performances made viewers almost relax while he self-deprecated or nailed his penis to a chair or board (Figure 1). As Jones explains,
[In] intertwining acts of piercing, laceration, and mutilation of the flesh with direct, personal narratives describing his close relationship with bodily pain, Flanagan breaks down resistance to the brutality of S/M practices through an amenably amateurish presentational style, approaching the audience intimately and congenially and drawing us in as collaborators in his masochism.
The key to Jones’ observation is Flanagan’s ability to draw “us in as collaborators in his masochism.” Through his performances, Flanagan was able to combine sensory experience with bodily experience in order to transfer what he underwent such that the audience began to feel what Flanagan felt. This exchange is what experts call “body empathy.” According to psychologists Delphine Grynberg and Olga Pollatos, “perceiving one’s body helps shape empathy.” Via studies where they asked participants to report on their responses to images depicting people in pain, Grynberg and Pollatos found that “the accurate perception of bodily states and their representation shape both affective and cognitive empathy.” In other words, the more a participant understood another person’s bodily experience—even in photographs—the more sensations (e.g. pain, arousal, or compassion) they felt in response.
Performance scholar Erin Brannigan defines this sensory and bodily exchange as a type of gestural exchange—a response that occurs between the performer’s bodymind (a concept that connects the body and mind) and the viewer’s bodymind, and vice versa. As such, performance becomes an important medium for (dis)abled artists, and Flanagan in particular, as a matter-space-time-event (a bodymind moving in performance) that creates a flow “from the work of the artist, to the components of the work, to the immediate response of the viewer.” Specifically, gestural exchange is a response that occurs within the body first and then the mind, then back in the body, continuing to ricochet until the performance ends.
In performance documentation, when Flanagan recites his song “Super Masochistic Bob with Cystic Fibrosis” on a large stage in front of an audience, with his oxygen tank by his side, oxygen tubing in his nose, and a medical gown tied around his neck to resemble a cape, his face is distended from taking too much prednisone. The audience hears the artist gasping for air between each word and coughing between each phrase. As mucus and phlegm rattle in his lungs and throat, the audience can see his chest move up and down and side to side as his rib cage expands and contracts, bones almost piercing through his skin. There are scars visible all over his nude body. One can hardly tell if they are caused by surgeries or sadomasochistic practices—a testimonial to Flanagan’s success at obscuring the lines between illness and self-afflicted wounds, pain and pleasure, and life and art (Figure 2).
As viewers witness Flanagan’s (dis)abled body struggling for air., they imagine their own bodies struggling for air. They can almost feel the tightness in their chests, the mucus in their throats, and the slight feeling of panic beginning to settle in. However, at the same time, they laugh and clap at the artist’s comic phrases such as “hum little diddle, I’m gonna die,” and “but Super Bob got twisted, now he’s into whips and chains.”
The artist’s use of pseudo-life-threatening S/M challenges reveals and embodies how Flanagan dealt with his chronic illness. Undeniably, all of the aspects of cystic fibrosis he experienced were just more obstacles with which het had to contend: when he coughed up blood, he had to notify his doctors; when he needed IV antibiotics, he had to be hospitalized; and so on and so forth. For Flanagan, S/M was a way to parody cystic fibrosis but also a way to cope with the illness. By purposefully causing himself pain, the artist both mimicked and mocked bodily experiences associated with pain due to (dis)ability, just as he did when singing “Super Masochistic Bob.”
Johanna Hedva also mimics painful bodily experiences caused by chronic illness, although without acts of self-inflicted pain. The artist describes Sick Witch (2016), which is the performative “id” of Hedva’s 2016 “Sick Woman Theory,” as “an insistence that most modes of political protest are
internalized, lived, embodied, suffering, and no doubt invisible.” In Sick Witch, Hedva wears a linen garment along with additional detachable linen fabric; a nylon underwear and garter set; and teal platform boots. They move slowly into different positions that invoke a body in pain and let out eerie sounds by fluctuating their vocal cords (Figure 3). The artist’s intention of creating tension between themselves and those who look upon their bodymind is exactly how a gestural exchange materializes. It locates gestural exchange as the participatory aspect of the performance as well as the exchange of knowledge, experience, and empathy between bodies via gestures and movements.
What is more, Hedva’s slow movements and long hair give the impression of a ghostly, mythological sorceress. The eerie sounds of pain plus the haunting phrase “But you’re too young to be sick!” pierce our eardrums, give us goosebumps, and cause us to cringe. Their moans and groans have an almost sexual tone, implying that the pain is almost pleasurable—a crucial aspect of Hedva’s performance since the noises of pain and pleasure resemble one another and in some instances cannot be easily differentiated. Like Flanagan’s performances, Hedva blurs the boundaries between suffering and joy to show that one cannot exist without the other, but also one is not more significant than the other.
Hedva was inspired for this performance by the Japanese tradition of butoh, a type of theater that focuses on themes of death and on slow movement. As Hedva explains, “sick witch is a contemporary version of this kind of [Japanese mythological ghost and demon figure], relocated into a context of western medicine and how it structures and conceptualizes the body.” However, rather than focusing on the individual self, which is the tradition in Western theater, Hedva seeks to produce a state of emotion that they can access onstage in order to exchange that state with their viewers.
In my email interview with them, Hedva states, “the performance of sick witch is of a character, a figure. sick witch is not me.” For Hedva this is very significant. While they cast their body into this character for the performance, anyone could play the role of Sick Witch. Further into the interview, they explain, “sick witch is a kind of fabled creature, an archetype, but from the context where the existence of a coherent, discrete self is not there, rather than an outlet or point of expression, they/she/it is a conduit to a state of emotion and mood.” As a result, Sick Witch (2016) erases the binary between body and mind, for the body becomes a conduit to a mental state.
When looking at performance art through a (dis)ability lens, we can see a unification of the body and mind. Bodymind is a materialist feminist disability studies concept from disability studies scholar Margaret Price that Sami Schalk elaborates on in her work in black feminist disability studies.. It is a concept that connects the body and mind in order to remove the distinction and separation created by traditional Western Cartesian philosophy. The latter philosophy hierarchizes the mind over the body, deemphasizes the importance of the body, and upholds the patriarchal valuing of logic over emotion. Price explains that the idea of the bodymind acknowledges that mental and physical processes not only affect each other but give rise to each other. In other words, the body and the mind are not separate but completely connected, intertwined, and even dependent on each other. The concept recognizes that a tension can occur between the body and mind, as well as unity. For example, when the mind commands the body to complete an act—like Flanagan nailing his penis to a chair—the body can react in resistance to the mind via pain. However, it is through pain in this specific situation that the body and mind are reunited, as pain becomes a full bodymind experience.
Flanagan loved exposing his bodymind as well as the personal for what they were. In a 1993 interview with V. Vale and Andrea Juno, editors and publishers of the RE/Search Publications (1980), Flanagan explains that when he is performing,he has a certain attitude that is “part of conquering the image of [himself] as an ill person.” He continues, “‘This is the hand I was dealt with’—total
acceptance…I think, ‘This is everything I can possibly be at the moment—that’s it. I’ll do what I can; I’ll hang weights on my balls; strap myself up’—to me there’s a real freeing aspect to this.”
In the same interview with Vale and Juno, Flanagan describes an instance where his partner Rose tied him up in a tightly-bound position and then left to do errands for a few hours. He explains that panic first set in: “What if there’s an earthquake? What is a helicopter drops in through the ceiling?” Then, “a kind of erotic feeling takes over” as the hours pass. Whichever position he is in becomes more and more painful while muscular cramping sets in and he has to come up with ways to pass the time. During these times, the artist wanted to be left alone (no television, no distractions) “blindfolded, gagged if possible” to just “deal with [the] position,” panic, and pain. As such, when Flanagan discusses his sadomasochistic performances, whether they are in public or private, he illustrates how they are “out-of-body experiences,” where “you’re just there.” Juno, however, in discussion with Flanagan, asserts that perhaps he is actually having an in-body experience, where he is feeling and truly being in his body. In other words, a bodymind event.
The significance of the bodymind extends beyond the realm of (dis)ability to issues of race, gender, and sexuality. Sami Schalk explains that “people of color and women have long challenged their association with pure embodiment and the degradation of the body as unable to produce knowledge through a rejection of the mind/body divide.” By uniting the two terms into one, we can better utilize and visualize the bodymind as a concept of complex embodiment across multiple disciplines. It asserts intersectionality into identity politics while insisting that the personal and private are political and public.
Hedva’s notion of the body as a “conduit to a state of emotion” in Sick Witch (2016) is an example of the bodymind connection as one complete entity and the union of public and private space as one existence. According to Hedva, “bipolar disorder, panic disorder, and depersonalization disorder have also come to me. This means that I live between this world and another one, one created by my own brain that has ceased to be contained by a discrete concept of the ‘self.’” The artist obliterates the individual self (private, personal, invisible, individual) in order to place emphasis on the lived condition itself, situating it entirely within the public (collective mind, political, visible). In addition, because this project shows that sensory experience occurs through bodily experience, Hedva’s performance exposes, as Jones explains, how “illness concretizes the body, forcing the subject to become hyperaware of [her/their/its/his] body-in-pain.” As such, Hedva’s public display of their body-in-pain makes the invisible visible through performance by completely obliterating the self in order to place (dis)ability entirely into the political, public sphere (Figure 5). Hedva also puts sensory and bodily experience (usually seen in the private sphere) on display entirely for the public. With pain caused by illness now in the public sphere, Hedva’s movements, verbalized pain, and gestures during the performance are part of the exchange between performer and viewer.
Sick Witch also invokes Jones’ concept of the body/self. As Jones describes it, the body/self is the “feminist or otherwise nonnormative body artist” who exposes and challenges the masculinism embedded in the so-called objective ideas behind conventional art history and criticism. In other words, body/self is the amalgamation of both the physical body and the intersectional, political self. The body/self combats the dominant, colonialist, Western, cis-white-male perspective by adding another historical and cultural point of view to the Western dialogue. Consequently, as a genderqueer, crip, Asian-American sorceress and artist, Hedva’s body/self confronts American, white, male-dominated politics and art history.
Hedva’s performance as the id of “Sick Woman Theory” (2016) is an important representation of (dis)ability politics. As feminist and queer theorist Alison Kafer explains in Feminist, Queer, Crip (2013), both disability studies and disability movements have been slow to recognize the potential linkages among people who have a chronic illness, use a wheelchair, hear voices, have depression, and people with compromised immune systems. Disability studies tends to focus more “on visible physical impairments and sensory impairments” rather than invisible impairments. In other words, disability studies often concentrates on what is seen in public rather than in private. However, what is private, invisible, and personal is also public, political, and communal. These ideas are the reason why performance can be a powerful tool for (dis)abled artists, especially those with invisible (dis)abilities, and are exactly what Hedva’s Sick Witch (2016) and “Sick Woman Theory” (2016) convey. In the words of curator Amanda Cachia, they are adding another form of embodiment to the already entangled subject of “dis/ability and complex embodiment.” Hedva adds additional layers of voice, perspective, artform, and scholarship to the already existing, but still new, field of disability studies within the realm of art history.
In fact, Hedva specifically broadens the discipline of art history because the study and representation of human bodies is a foundational pillar of the field. By revealing their body to the public, the artist not only expands on (dis)abled art histories, but also feminist, postmodern, queer, and poststructuralist art histories. Exposing one’s own body as the art object is a historical practice that nonnormative body artists (e.g. artists of color, female artists, and queer artists) have used not just in performance art, but in all art forms, especially video, text, sound, and photography. Jones describes this practice in art history as body art, “a complex extension of portraiture,” and as an artwork that takes “place through an enactment of the artist’s body.” Posing the body as the art object, the artist places their bodymind within the realm of the aesthetic as a political domain. In other words, the artwork itself is the artist’s bodymind and life experiences.
I have used the term bodymind in this essay as a way to critically discuss invisible (dis)ability—autoimmunity, chronic illness, and sickness. However, like Price and Schalk, I argue that bodymind must do theoretical work as a disability studies term rather than serve as a stand-in for the “mind and body” phrase. Bodymind must include all forms of complex embodiment, whether mental, physical, visible, or invisible, and all the combinations and variations in between. By performing the subject as object, both Bob Flanagan and Johanna Hedva blur the personal with the political. Flanagan and Hedva simultaneously expose their bodies as art objects to spectators and establish a physical and emotional exchange between the performer and viewers. Each artist reveals their bodies as personal and political. While Flanagan exhibits the self and Hedva displays the political, both artists break down the binary that divides public and private space, art and life, performer and viewer, and body and mind.
 Amelia Jones, Body Art Performing the Subject (Minneapolis: University of Minnesota Press, 1998), 1.
 Definition of cystic fibrosis: https://www.cff.org/What-is-CF/About-Cystic-Fibrosis/.
 Ann Millett-Gallant,The Disabled Body in Contemporary Art (New York: New York: Palgrave Macmillan, 2010), 14-15. For this specific quote, Millett-Gallant is referring to performance theorist Peggy Phelan’s (1993) “questioning of the consequences of representation, particularly of the body, for subjects on display.”
 Millett-Gallant highlights this connection in relation to Rosemarie Garland-Thomson’s notion of the stare/gaze. Garland-Thomson, an interdisciplinary disability studies scholar, developed her theory of the stare/gaze through the portrayal of people with disabilities (specifically people categorized as “insane” during the mid- to late-1800s) in photography. She claims that taking photographs of people with disabilities distances viewers from the viewed and makes spectacles out of the disabled subjects in the photographs. While I have some reservations about Garland-Thomson’s stare/gaze theory, I think it is still crucial to include her here since so many disability studies scholars are in conversation with her. However, like Millett-Gallant explains, in today’s visual culture, Garland-Thomson’s theory is out of date. Because. “We live in a visual society, in which we are all pervasively gazing/staring at each other and forming our notions of ourselves both in identifications with and against other bodies.” What is key here, though, is that even in the stare/gaze theory, bodies are still in relation to other bodies. Without this relationship how could disability theories even exist?
 Jones, Body Art, 231.
 Sheree Rose and Bob Flanagan, Sick: The Life and Death of Bob Flanagan, Supermasochist (1997), 92 minutes. Please note, I am purposefully removing Kirby Dick from authorship here to acknowledge the inappropriate and unjust methods he used to obtain the rights of the video footage filmed by Rose and Flanagan featured throughout Sick.
 Jones, Body Art, 231.
 Delphine Grynberg and Olga Pollatos, “Perceiving one’s body shapes empathy,” Physiology & Behavior 140 (2015), 54-60.
 Grynberg and Pollatos, “Perceiving one’s body shapes empathy,” 54-60.
 Bodymind is a materialist feminist disability studies concept developed by Margaret Price. It is a concept that connects the body and the mind—two entities that have been made distinct and separate by traditional Western Cartesian philosophy and patriarchal society’s valuing of logic over emotion. It is a term indebted to phenomenological philosophy, a theory that heavily relies on the various experiences felt, sensed, and observed through and with the body. Utilizing the study of phenomenology when analyzing disabled artists and their performances helps us, as spectators, better understand the bodily experiences of the performer and thus the disabled body.
 Brannigan, “Dancefilm as Gestural Exchange,” 4. I use matter-space-time event here because, like Brannigan explains, I want to bring attention to the gesture of a matter (i.e. a performer, spectator, (dis)abled bodymind) in, with, and toward space-time. Where the “in, with, and toward” signify movements of the matter. The thrust of the matter-space-time event “manifests as a movement and sets up its autonomy as that which has no impact, resolution, or reason within our systems of knowledge, but instead draws us into a fascination with the movement” itself. Thus, it induces a heightened awareness of our own bodyminds and even of those around us.
 These kinds of experiences are scientifically studied as examples of embodied cognition. The Stanford Encyclopedia of Philosophy (https://plato.stanford.edu/entries/embodied-cognition/#EmbVsTraCogSci) explains that “cognition is embodied when it is deeply dependent upon features of the physical body of an agent, that is, when aspects of the agent’s body beyond the brain play a significant causal or physically constitutive role in cognitive processing.” In other words, a person embodies cognition when their body reacts alongside their minds. For example, we typically gesture when we speak to one another, and gesturing facilitates not just communication but language processing itself. For further information, see D. McNeill, Hand and Mind: What Gestures Reveal about Thought (Chicago: University of Chicago Press, 1992).
 Rose and Flanagan, Sick.
 V. Vale and Andrea Juno, People Series: Volume One, Bob Flanagan: Supermasochist (New York: Re/Search Publications, 1993), 75.
 Vale and Juno, 75.
 Hedva, Email message to author, February 6, 2018. Like Flanagan’s performances, I was unable to witness Hedva’s performance in person. In addition, the video of Sick Witch (2016) that Hedva chose to make public is a version that they performed privately in their apartment. There are only photographs of the public version. Thus, to study Sick Witch, I analyzed both the photographs of the public performance and the video of the private performance. Definition of “id”: https://www.simplypsychology.org/psyche.html.
 Hedva, Email message to author, February 6, 2018. For this quote and any of the following from Hedva, I have mirrored the artist’s chosen writing style.
 Hedva, Email message to author, February 6, 2018.
 Hedva, Email message to author, February 6, 2018.
 Margaret Price, “The Bodymind Problem and the Possibilities of Pain,” Hypatia 30, no. 1 (2014), 269.
 Note that pain, here, is only one example of how the body and mind are united.
 V. Vale and Andrea Juno, interview with Bob Flanagan, Bob Flanagan: Supermasochist (New York: Re/Search
 Ibid, 77.
 Ibid, 74.
 Ibid, 74-75.
 Ibid, 74-75.
 Schalk, Bodyminds Reimagined, 6. Drawing the body and the mind together is a century-long project of theorists who want to bring the work of phenomenologists such as Edmund Husserl, Maurice Merleau-Ponty, and Don Ihde into feminist and disability studies. Framing the body and the mind in a singular term is a way to visualize the body and the mind together as one entity.
 Hedva, “Sick Woman Theory.”
 Jones, Body Art, 230.
 Ibid, 5.
 Alison Kafer, Feminist, Queer, Crip (Bloomington: Indiana University Press, 2013), 18.
 Amanda Cachia, “Curating New Openings: Rethinking Diversity in the Gallery.” Art Journal, 3-4 (2017), 48-50.
 Jones, Body Art, 13.
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