Revealed bodies: performing the disabled subject with chronic illness

Revealed bodies: performing the disabled subject with chronic illness

Please note: all image and video information and credits are provided at the end of this essay.

While pain cannot be shared, its effects can be projected onto others such that they become the site of suffering. – Amelia Jones

Bodies with chronic illness may reveal no signs of illness. Bodies with chronic illness cause pain, require maintenance, and cost money. Bodies with chronic illness are the subject and the object. Bodies with chronic illness are both embodied anddisembodied. They are bodies with technology.

Bodies with chronic illness are disabled bodies. Because bodies with chronic illness have invisible disability, their stories are harder to tell through visual art. One way to overcome that barrier is through performance art.

Artists Johanna Hedva (seen above) and Bob Flanagan externalize internal pain caused by chronic illness. They do so by putting their disabled bodies on display through performance. While Flanagan takes a humorist and masochistic approach to revealing his pain due to illness in public space, Hedva does so through an auditory approach by covering their face with their hair and making eerie sounds through slow body movements. By performing the subject (i.e. their disabled, chronically ill bodies), each artist reveals, what philosopher and post-phenomenologist Don Ihdeexplains, their first body through their second body, while simultaneously exposing their bodies as object. [1] However, while Flanagan ultimately reveals his body as self, Hedva reveals their body as the political.

In order to dive deeper into these two artists’ performances, this project explores a different method of understanding. It seeks to understand the Kantian perspective of the sensory experience rather than focusing solely on rational thought. In other words, what are the sensory aspects of these artists’ performances in addition to the rational aspects? How do these two artists reveal their illnesses through performance art? How do they make the invisible visible?

Furthermore, this project shows that sensory experience can only occur through bodily experience, a key aspect of phenomenology. It explores what media theorist Vivian Sobchack explains as the lived body experience, and what it means to be “embodied.” [2] Most importantly, as art writer Amelia Jones shows “illness concretizes the body, forcing the subject to become hyperaware of [her/theirs/its/his] body-in-pain.” [3]

Thus, to not only observe but feel the performances by Hedva and Flanagan, I myself externalize my chronic illness (i.e. placed myself as disabled subject/object) in performance art (seen in intro image). However, rather than performing the subject in pain, I perform the subject undergoing maintenance (i.e. my breathing treatment). Performing my breathing treatment does not reveal the subject in pain but exposes the technology that “fixes” pain caused by chronic illness in the body.

In addition, performing my breathing treatment brings the technological aspects associated with the private sphere of invisible disability into the public sphere. It reverses the notion proposed by French philosopher Georges Canguilhem that human bodies can only maintain technology and mechanics. [4] The performance, therefore, reveals how technology and machines maintain the disabled, chronically ill body.

Through this different method of analyzing Hedva’s and Flanagan’s performances, I show how these two artists bring their interior body (i.e. subject, invisible, private, illness/disability, body one) out into the exterior (i.e. object, identity, public space, body two) in performance art.

This project in particular is of utmost importance because of three reasons. First off, it touches on a subject insufficiently explored by disability studies scholars, i.e. chronic illness. Secondly, analyzing the disabled artist as subject in performance art complicates the interdisciplinary disability studies scholar Rosemarie Garland-Thomson‘s theory of the stare/gaze. And, finally, by looking at Hedva, Flanagan, and myself through a phenomenological lens, we discover just how important the lived body experience is when combining disability studies with art history.

To put these three reasons into conversation with the two artists mentioned above and myself, I will first explain the importance of performance art and its relation to artists who identify as disabled or chronically ill, and why these artists in particular are important. Next, I will provide a reflection of Flanagan’s CF/SM performance(s) and Hedva’s performance Sick Witch. Then, I will provide a reflection of my own experience performing Revealed Body. I do this for two reasons: first, because it brings attention to Hedva and Flanagan as the main focus for this project. By focusing first on the aforementioned artists, I show how they inspire and influence my performance, and in turn, how my performance responds to theirs. In addition, through my own lived body experience, I am able to further verbalize Hedva’s and Flanagan’s lived body experiences and the feeling of performing embodiment.

Second of all, I show how each of these three artists’ embodiment through performance exemplifies the three separate bodies, i.e. body one, body two, body three, proposed by Ihde in Bodies in Technology. [5] While these three bodies are separate and distinct, they work together to create full bodily experience.

In The Disabled Body in Contemporary Art, art historian Ann Millett-Gallant argues for the importance of “disabled artists” who practice performance art since it is the “art form that most fully understands the potentials of disappearance, or invisibility, and offers the most means for exchange between the viewer and the spectacle.” [6] The author’s mention of an exchange between the viewer and the spectacle, here, stems from Rosemarie Garland-Thomson’s stare/gaze theory. Garland-Thomson, an interdisciplinary disability studies scholar, developed her theory of the stare/gaze through the portrayal of people with disability (specifically people categorized as “insane” during the mid to late 1800s) in photography. She claims that by taking photographs of people with disability distances viewers from the viewed and makes spectacles out of the disabled subjects in the photographs. [7]

When an artist makes their body the “disabled subject” of an artwork, however, especially in performance art, they are able to stare/gaze back at their viewer or audience. And, as performers make spectacles of themselves, they gain agency in the power of self-representation by making the invisible visible. [8] So, why Johanna Hedva and Bob Flanagan?

I have chosen to reflect upon the performances of Hedva and Flanagan (seen above) for three distinct reasons. First of all, both Hedva and Flanagan live(d) with chronic illness, an element I deeply relate to, since I too live with chronic illness. Johanna Hedva explains in Sick Woman Theory 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.” [9] Bob Flanagan died of cystic fibrosis in 1997 after living 43 years with the illness. I also have cystic fibrosis, so I especially relate to Flanagan and his methods for revealing the invisible. In fact, I can’t even write this essay for a continuous five minutes without coughing, heaving, and expelling mucus out of my lungs.

Secondly, I chose artists with chronic illness because chronic illness is a subject insufficiently explored by disability studies scholars. Disability studies is a fairly new American scholarship that formed in the early 1990s after the United States government passed the Americans with Disabilities Act (ADA), the civil rights law that prohibits discrimination based on disability. It is a social model that refutes the medical model of disability which tends to focus on disability as a corporeal problem that needs to be fixed and/or eradicated. According to Millett-Gallant, the social model “asserts that disability is constructed through environmental, social, and political apparatuses that work to exclude disabled people”; whereas the medical model proposes that the body itself should change. [10] Disability studies, then, explains disability as a social construction, a similar argument that has been made in gender, race, sexuality, ethnic, and class studies. As Millett-Gallant explains,

The disabilities studies term ‘ableism’ draws parallels to sexism, racism, classism, and homophobism to encompass multidimensional practices (networks of social policies, attitudes, and daily social exchanges) that marginalize disabled people. [11]

What disability studies doesn’t do, on the other hand, is look at the often-disabling effects of disabled bodies. [12] In other words, what about the bodies that are not inhibited by environmental constructions and apparatuses, but are still inhibited by social and political apparatuses? What about the bodies that “don’t look sick” but really are? And, what about the bodies that mostly suffer from pain internally, require medical attention, and constant medical treatment in order to live?

Feminist and queer theorist Alison Kafer explains in Feminist, Queer, Crip that both disability studies and disability movements have been slow to recognize potential linkages among people who have a chronic illness, use a wheelchair, hear voices, have depression, and people with compromised immune systems. Indeed, disability studies focuses more “on visible physical impairments and sensory impairments” rather than invisible impairments. [13] So, by including Hedva, Flanagan, and myself in this project, I am attempting to add an additional layer of voices, perspectives, art forms, and scholarship to the already existing, but still new, field of disability studies within the realm of art theory. In the words of Amanda Cachia, I am adding another form of embodiment to the already entangled subject of “dis/ability and complex embodiment.” [14]

Finally, while these two artists do reveal the interior/private body to the exterior through performance, Hedva and Flanagan both approach their performances through slightly different methods and for slightly different reasons. And, it is here where my performance became very useful for analyzing and understanding Hedva’s and Flanagan’s performances through a phenomenological lens and Ihde’s explanation of body one, body two, and body three.

Ihde investigates several senses of the body in relation to other bodies, objects, and our experiences of being embodied. In order to illustrate these several senses, he explains that we are all made up of three separate bodies: body one, body two, and body three. Body one is the sense that “we are our body…in which phenomenology understands our motile, perceptual, and emotive being-in-the-world.” [15] In other words, our body one is how we feel, sense, observe, etc. within and with our body. It is our internal, physical body/self: our organs, lungs, eyes, etc. Body two is “not biological but socially constructed.” [16] It is the social and cultural sense that we also experience. And, although body two is placed upon us, it is still part of our lived bodily experience. “Traversing both body one and body two is [the] third dimension, the dimension of the technological.” [17] In other words, body three is how we experience body one and body two through and with technology, where the technological refers to anything that is non-human (something as simple as a pen is seen as technological through this lens).

While Ihde’s phenomenological theory is very useful for organizing this essay and exploring the bodily experiences of artists with chronic illness, his point of view undeniably comes from an able-bodied, Western, cyst-white-male perspective. By placing his theory in connection with a disability studies and art theoretical lens, this project furthers his theory into a realm that extends beyond the singular, “universal,” able-bodied, Western, cyst-white-male perspective. [18]

By positioning Hedva’s performance with Flanagan’s and then my performance, it becomes clear that each artist reveals their body when seen through Ihde’s phenomenological lens. But, through an analysis of each individual artists’ performances, we find that Flanagan’s performance(s) becomes more succinct with the idea of body one, Hedva’s with the idea of body two, and mine with the idea of body three. Please watch the video below before continuing.

Body one, Bob Flanagan. 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 parents flipped a coin and the family moved to Los Angeles. [19] There, he, his two brothers, and his sister grew up in a household and community of Irish Catholics where, Flanagan especially, “got to experience Catholic guilt and confession, the Stations of the Cross, and the saintliness of suffering.” [20] These experiences played a major role throughout his childhood and shaped the way he felt excited during acts of sadomasochism. While Flanagan never went to Catholic school and stopped believing in religion in the 1970s, events from his childhood involving Catholicism and sexual games played with his cousins ultimately shaped who he became and how he dealt with the chronic pain and suffering caused by cystic fibrosis.

In Body Art Performing the SubjectAmelia Jones describes Flanagan as a poet who entered “the art world through performative sadomasochistic practices in private S/M clubs in San Francisco and Los Angeles.” [21] From there, in the 1980s, Flanagan began performing his S/M practices in art galleries in tandem with his partner Sheree Rose. Like the video above, he would often read poetry while performing acts of sadomasochism. Flanagan was always very engaged with his audience and very likable. His humor and charm during performances made visitors almost relax while he self-deprecated and/or nailed his penis to a chair or board. As Jones explains,

Flanagan mitigates the horror of his 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. [22]

Indeed, Flanagan loved exposing his body and self for what it was. In an interview with V. Vale and Andrea Juno, editors and publishers of the RE/Search Publications, Flanagan explains that when he is performing, he has a certain attitude that’s “part of conquering the image of [himself] as an ill person.” [23] 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. [24]

To Flanagan, “Dealing with pseudo-life-threatening SM challenges ties in to how [he’s] had to deal with [his] illness.” [25] Undeniably, all the aspects of cystic fibrosis were just more things he had to deal with: when he coughed up blood he had to deal with that, when he needed IV antibiotics he had to deal with that, and so on and so forth. So, for Flanagan, “There’s no way to make fun of an illness that can make children die at an early age—that’s serious, but SM mocks it all.” [26] In his poem “Why?” Flanagan begins to reveal his desire for S/M (seen in video below).

In addition, when Flanagan discusses his sadomasochist performances, whether they’re in public or in private, he illustrates how they are “out-of-body experiences,” where “you’re just there.” [27] Juno, however, in discussion with Flanagan, asserts that perhaps he is actually having an in-body experience rather than out-of-body one; “actually feeling and truly being in [his] body.”

In the same interview with Juno and Vale, Flanagan describes an instance where Sheree had tied him up in a tightly bound position and then ran off to do errands for a few hours. He explains that panic first sets in: “What if there’s an earthquake? What if a helicopter drops in through the ceiling?” Then, “a kind of erotic feeling takes over.” As the hours pass, the “spread-eagled” position becomes “more and more painful” and muscular cramping sets in. Then, “you have to come up with ways to pass the time.” During these times, Flanagan just wanted to be left alone (no television, no distractions) “blindfolded, gagged if possible” to just “deal with [the] position.” [28]

Flanagan reveals his body one through his body two, i.e. the way he identifies and the way his audience perceives him, during performance. And, he is doing this revealing via his body three: his technological devices here coincide with the tools and objects used for bondage and acts of self-laceration. In addition, Jones, Vale, and Juno also describe Flanagan, especially in his relationship with Rose, as a political figure. For Flanagan and Rose, “their relationship is the embodiment of the truism the personal is the political.” [29]

With this being said, however, all the descriptions of Flanagan’s public and private performances show him as complete manifestation of Ihde’s body one. The artist is completely in his body. During his private acts of sadomasochism, he is feelingobserving, and sensing every part of his body through a practice of complete self-control and self-awareness. And, during his public performances, he exposes himself as he is. Ultimately, Flanagan reveals his illness to his audience, thus revealing his body one through his body two, but does so with particular emphasis on his first body. Because, even in performance, in front of an audience, Flanagan still thinks about how his body is physically and emotionally feeling and how to control those feelings. Please watch the video below before moving forward.

Body two, Johanna Hedva. Like Flanagan, Hedva is also a writer and performance artist who grew up in Los Angeles, California. However, where Flanagan is more concentrated on revealing the body as self, Hedva is undoubtedly focused on revealing the political as self and vice versa. They are “a fourth-generation Los Angelena on their mother’s side and, on their father’s side, the grandchild of a woman who escaped from North Korea.” [30] And, to reiterate, they live with chronic illness. As Hedva puts it in Sick Woman Theory,

Here is what has come to me: Endometriosis, which is a disease of the uterus where the uterine lining grows where it shouldn’t – in the pelvic area mostly, but also anywhere, the legs, abdomen, even the head. It causes chronic pain; gastrointestinal chaos; epic, monstrous bleeding; in some cases, cancer; and means that I have miscarried, can’t have children, and have several surgeries to look forward to. […] 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 “self.” […] Finally, an autoimmune disease that continues to baffle all the doctors I’ve seen, has come to me and refuses still to be named…I can say it brings unimaginable fatigue, pain all over all the time, susceptibility to illnesses, a body that performs its “normal” functions monstrously abnormally. The worst symptom that mine brings is chronic shingles. [31]

The performance I’ve chosen to focus on for this project, Sick Witch, is the performative id of Hedva’s essay Sick Woman Theory. [32] Sick Woman Theory “is an insistence that most modes of political protest are internalized, lived, embodied, suffering, and no doubt invisible.” [33] It is making the invisible visible through both political emphasis and performance.

In Sick Witch, Hedva wears a linen garment with additional detachable linen fabric; a nylon, underwear and garter set; and teal platform boots. She moves slowly into different positions that invoke a body in pain and lets out eerie sounds by fluctuating her vocal cords. In an interview with them, Hedva states “the performance of sick witch is of a character, a figure. sick witch is not me.” [34] For Hedva, this is extremely important. While they are casting their body into this character for this performance, according to the artist, anyone could play the role of Sick Witch. Further in the interview, they explain “sick witch is a kind of fabled creature, an archetype, but from a 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.” [35]

This aspect of Sick Witch is what inspires me to think of Hedva and their performance as Ihde’s idea of body two. Because, while it can be argued that they are indeed revealing their body one (body/self/flesh) through their body two (the political) while using their cane and clothing as props (technology, body three), body one for Hedva is irrelevant here. In fact, they are obliterating the individual self in order to place emphasis on the lived condition itself; completely taking out the chronic illness of the self in body one and completely placing it in body two. Please watch the video below before continuing.

Body three, Mary Grace Bernard. Like Bob Flanagan, I too have cystic fibrosis. Over the years, cystic fibrosis (CF) has been described to me via doctors, nurses, therapists, respiratory therapists, social workers, etc. as a “life threatening disease.” It is genetic and it is chronic. In other words, you are born with it and you live with it until you die. When I was five years old, I was diagnosed with CF after the death of my younger brother who died of it. Cystic fibrosis can take on many forms: it can cause over 1,000 individual “mutations,” which lead to different symptoms. According to the aforementioned list of medical people, my CF has an identification number: homozygous F508DELTA; the “mutation” that most people with CF acquire when they are born. [36]

My daily symptoms include: chest tightness, coughing, “abnormal” amount of infected, bloody mucus production in my lungs and sinuses, stomach cramping, diarrhea, acid reflux, nausea, headaches, fatigue, sinus pressure, scratchy throat, the list goes on. In order to irradiate these symptoms, my doctors have prescribed me lists of breathing treatments and medications, that through my life time, have spanned into the hundreds.

After analyzing a few of Flanagan’s performances and Hedva’s Sick Witch, I performed Revealed Body. At the center of a small, cold gallery space, I placed my personal green reading chair. Next to it, I placed a cart filled with my medications and a small nebulizer machine, my large machine (called a Vest), and a small trashcan. At ten o’clock in the morning, I did my thirty-minute-long breathing treatment in front of an audience in just a bra and underwear. Depending on the month, or how I am feeling, this treatment usually takes me between thirty minutes to an hour and happens either twice or three times a day.

I decided to perform my breathing treatment, while revealing most of my flesh, because I felt it would be a good response to Flanagan’s and Hedva’s performances. First off, each person experiences something different when they are performing in front of an audience. However, I wanted to perform for this project in order to understand the lived body experience and what it means to be embodied in front of an audience, in the public realm.

Unlike Flanagan, but similar to Hedva, I chose to look only at the camera filming in front of me instead of engaging with the audience. I felt this was important because I distinctly wanted my body to be both subject and object of this work of art. In addition, I wanted to make sure that my audience understood that I was specifically revealing my body one through my body two, rather than focusing solely on my body one (similar to how Flanagan performs). Although I did not interview Hedva with this specific thought in mind, after my performance, I better understand why they chose to not engage with their audience. By choosing not to engage with their audience, Hedva became both the subject and the object of their art, but most importantly entered the realm of body two and the political.

Choosing to perform in only a bra and underwear was also a response to both Flanagan (who usually performed nude) and Hedva (who revealed much of their flesh skin during Sick Witch). But, it was also a choice that made my body the object of the work and revealed my body one.

After my performance, it became clear that Revealed Body not only related to the other performances but became the body three of Hedva’s body two and Flanagan’s body one. This is so, because my performance is deliberately revealing my body one through my body two while using technology, thus making it body three. While it can be argued that each of the artists mentioned here make the invisible visible by traversing both body one and body two into body three, each artist emphasizes one type of bodily experience in their performance.

While I have decided to divide these artists into three different bodily experiences in order to show how they differ and how they are similar, what is truly important here is the significance of our lived bodily experiences. Because it is through our bodies that we experience the world around us. And, at the center of these bodily experiences, for these three artists, is chronic illness and disability.

These complex embodiments not only provide new perspectives in art making but also generate new methods for analyzing the history of art and the history of the world. The way our personal/interior bodies feel informs the way we reveal and see our identifiable bodies and how we conform to our technologies, i.e. body one + body two = body three.

In addition, like Kafer, I am trying to “pluralize the ways we understand bodily instability” through this project. [37] In Feminist, Queer, Crip she queers the term disability by replacing it with crip, to give disability more fluidity and ambiguity so that it can be ever-changing, regenerative, and more-encompassing to include more people than just a select few.

Thus, this paper works to expand disability studies and disability scholars’ theories of disability. While looking at the social model of disability, which shows that disability is a social construction, is important, it is of particular significance to look beyond pure “social constructions” and look back at the body and its constructions, i.e. the disabling effects of disabled bodies. It is only then that we can make the personal political, the private public, and the invisible visible.

Images by order of appearance: Mary Grace Bernard, “Revealed Body,” images by Hannah Ronan-Daniell, gif by Mary Grace Bernard, 2018; Johanna Hedva, Sick Woman Theory, by Pamila Payne, 2015, via Mask Magazine; Bob Flanagan, 1993, via Re/Search Bob Flanagan: Supermasochist

Videos by order of appearance: Bob Flanagan, “Cystic Fibrosis Song,” film segment from Kirby Dick’s Sick: The Life and Death of Bob Flanagan, Supermasochist, 1997, via YouTube; Bob Flanagan, “Why?” film segment from Kirby Dick’s Sick: The Life and Death of Bob Flanagan, Supermasochist, 1997, via YouTube; Johanna Hedva, “Sick Witch,” 2016, via Johanna Hedva and Vimeo; Mary Grace Bernard, “Revealed Body,” edited by Susan Gordon, 2018, via Vimeo

Notes
[1] Ihde explains his theory of body one, body two, and body three in the “Introduction” of 
Bodies in Technology, pages xi – xx.

[2] This quote is taken from the introduction of Vivian Sobchack’s Carnal Thoughts, Embodiment and Moving Image Culture.

[3] Jones explains this in Body Art Performing the Subject on page 230. At then end of the last chapter “Dispersed Subjects,” Jones talks about Bob Flanagan and Sheree Rose and their performances as treating “The Body as Meat.”

[4] Canguilhem explores this idea in his 1652 publication of Machine and Organism.

[5] I propose this idea for this project because I find it important to show how each of these artists reveal their body similarly but also differently. While each artist does in fact reveal their body one through their body two while simultaneously traversing their first two bodies into body three; Hedva, Flanagan, and myself all do so with particular emphasis on one type of body experience.

[6] Millett-Gallant discusses this idea in “Enabling the Image” of The Disabled Body in Contemporary Art on pages 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.”

[7] Garland-Thomson explains her stare/gaze theory in the article “Seeing the Disabled: Visual Rhetorics of Disability in Popular Photography” found in The New Disability History: American Perspectives, ed. Paul K. Longmore and Larui Umansky (2001, New York: New York University Press, p. 335 – 374). She also discusses it in her book Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature (1997).

[8] One interesting note that I did not have time to go into here, is the fact that both Hedva and I choose not to engage with our audiences in our performances. Flanagan, on the other hand, always engages with his audience.

[9] This quote is taken from Hedva’s introduction of Sick Woman Theory.

[10] Millett-Gallant, “Enabling the Image,” page 7.

[11] Ibid., page 7.

[12] This idea extends from feminist and queer theorist Alison Kafer. She talks about this in the introduction to Feminist, Queen, Crip on page 18.

[13] Ibid., page 17.

[14] Amanda Cachia, “Curating New Openings: Rethinking Diversity in the Gallery,” Art Journal, Volume 76, Fall-Winter, No. 3-4, 2017.

[15] Don Ihde, “Introduction,” Bodies in Technology, pages xi – xx.

[16] Ibid., pages xi – xx.

[17] Ibid., pages xi – xx.

[18] Ultimately, this project does come from my personal point of view, which is disable-bodied, feminist, and queer, but it is also Western and white. My goal moving forward and for projects to come, is to extend this point of view even farther than the Western-white perspective.

[19] Flanagan discusses his childhood in his first interview with V. Vale and Andrea Juno recorded in the Re/Search Publication, Bob Flanagan: Supermasochist on page 10.

[20] Ibid., page 10.

[21] Jones, Body Art Performing the Subject, page 231.

[22] Ibid., page 231.

[23] Bob Flanagan, Bob Flanagan: Supermasochist, page 77.

[24] Ibid., page 77.

[25] Ibid., page 75.

[26] Ibid, page 75.

[27] Ibid., page 74 – 75.

[28] Ibid., page 74 – 75.

[29] Jones, page 230.

[30] Johanna Hedva, “About & Contact.”

[31] Hedva, Sick Woman Theory, Mask Magazine: The Not Again Issue.

[32] Hedva discusses this with me via an email interview.

[33] Hedva, Sick Woman Theory.

[34] This quote is taken from an interview I conducted with Hedva via email.

[35] Ibid., via email.

[36] I am unsure which mutation Bob Flanagan was diagnosed with or even if scientists/doctors had identified the gene that causes CF by the time he passed.

[37] Kafer, “Introduction,” page 14.

References
Bernard, Mary Grace. 2018. Interview with Johanna Hedva via email.

Cachia, Amanda. 2017. “Curating New Openings: Rethinking Diversity in the Gallery.” Art Journal, 3-4: p. 48 – 50.

Dick, Kirby. 1997. Sick: The Life and Death of Bob Flanagan, Supermasochist. 89 minutes.

Flanagan, Bob and Sheree Rose. 2000. The Pain Journal. Cambridge: Semiotext(e)/Smart Art Press.

Garland-Thomson, Rosemarie. 1997. Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature. New York: Columbia University Press.

Garland-Thomson, Rosemarie. 2001. “Seeing the Disabled: Visual Rhetorics of Disability in Popular Photography.” The New Disability History: American Perspectives, ed. Paul K. Longmore and Larui Umansky. New York: New York University Press. p. 335 – 374.

Hedva, Johanna. 2016. “Sick Woman Theory.” Mask Magazine, The Not Again Issue (24)http://www.maskmagazine.com/not-again.

Hedva, Johanna. 2018. “About & Contact.” Johanna Hedvahttp://johannahedva.com/biocv.html.

Ihde, Don. 2002. Bodies in Technology. Minneapolis: University of Minnesota Press.

Jones, Amelia. 1998. Body Art Performing the Subject. Minneapolis: University of Minnesota Press.

Kafer, Alison. 2013. Feminist, Queer, Crip. Bloomington: Indiana University Press.

Millett-Gallant, Ann. 2010. The Disabled Body in Contemporary Art. New York: Palgrave Macmillan.

Sobchack, Vivian. 2004. Carnal Thoughts, Embodiment and Moving Image Culture. Berkeley: University of California Press.

Vale, V. and Andrea Juno. 1993. Bob Flanagan: Supermasochist. New York: Re/Search Publications.