Disability Aesthetics: A Crip Artistry Manifesto
As published in Redefining Disability. Leiden, The Netherlands: Brill. 2022
Aesthetic:
Adjective: concerned with beauty or the appreciation of beauty
Noun: a set of principles underlying and guiding the work of a particular artist or artistic movement (Oxford Languages)
I grew up nearsighted, eyes focused within a few inches of my face. The perfect distance for reading. I had dislocated lenses, (which glasses don’t fix), so at a young age I fell in love with cameras. I used them like binoculars to help me see what my own eyes could not. I loved that a photograph could be printed out, lifted into focus, show me things that I had experienced in person but had never been able to see clearly. Today, my camera still operates as an extension of my visual field, one that can be adjusted and manipulated, focusing for me when my own eyes do not.
I love the form of the human body, the softness of the skin and the fragility of the bones. Inspired by the works of artists like Francesca Woodman and Robert Mapplethorpe, I began to photograph my own body. It took years for me to begin to break through the ableism that I had internalized, to begin feeling at home in my body. Seeing my body in photographs, in the same plane as the rest of my world, enabled me to see it for what it was, disabled but thriving.
My work is an expansive self-portrait. Sometimes literally–photographs of my body, documentations of my life. Others build on environmental cues that place the viewer in my position through fragmented imagery and visual confrontation. Together these photographs tell my story from my own perspective. My work is an investigation of capacity, normalcy, disability, agency, visual acuity, and interpretation.
When I had surgery on both eyes at eighteen, I gained distance vision in my left eye, creating a new dichotomy of space. My eyes are set, programmed in a cyborgian sense, to focus at two completely different distances. Left eye fifteen feet, right eye two. Everything else is guesswork.
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Here’s the thing: a visually impaired photographer makes for good inspiration porn and even though I didn't know that was what was happening, I knew it felt icky. Every time that my vision was brought up in relation to my art I would try to laugh it off as inconsequential or irrelevant. But as many disabled people know, I was wrong. My disability is important - it changes the way I work, think, exist. I had pushed away my disability for so long, ignored it and dismissed it and for the first time I began to wonder if I should try to give myself a little bit more credit.
Inspiration porn is a term that was coined by Stella Young in 2012. Young wrote: “Inspiration porn is an image of a person with a disability, often a kid, doing something completely ordinary - like playing, or talking, or running, or drawing a picture, or hitting a tennis ball - carrying a caption like ‘your excuse is invalid’ or ‘before you quit, try’” (2012, para. 5).To expand on Young’s definition, inspiration porn is any state of holding up a disabled person as what Rosemary Garland-Thompson called wondrous or sentimental (2002, p. 59-65). Hey, this photographer is blind and she won an award. Young continues:
Inspiration porn shames people with disabilities. It says that if we fail to be happy, to smile and to live lives that make those around us feel good, it's because we're not trying hard enough. Our attitude is just not positive enough. It's our fault. Not to mention what it means for people whose disabilities are not visible, like people with chronic or mental illness, who often battle the assumption that it's all about attitude. And we're not allowed to be angry and upset, because then we'd be "bad" disabled people. We wouldn't be doing our very best to "overcome" our disabilities. (2012, para. 25).
I have an invisible disability. At the moment the only visible signifier of my disability is a pair of bifocal glasses. Eyeglasses also happen to be the only form of adaptive technology that has ever been “normalized” into mainstream fashion and culture. This normalization then continues to render my disability as invisible. I live my life under the pretense of being able bodied. It’s an illusion, one that is created by an ableist model that requires a normative body in order to succeed. I grew up socially conditioned to see my own body as failing. Invisible illnesses bring their own sets of stigmas and complications, within able-bodied and disabled communities alike. This is not an endorsement of the social model of disability which situates disability as a construct of society, but rather a statement of my reality. I personally struggle with the social model’s refusal to acknowledge the lived experience of having a disability, the experience of feeling pain, the physical existence of being disabled.
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In the medicalized world, my body is broken and must be fixed. Mainstream culture teaches people with disabilities that our success is intrinsically tied to rejecting our bodies. In order to succeed we must “overcome” our own existence. The medical process is one of surrendering control. It breaks you down into a summation of parts, fragmenting your body and your identity. Every intervention brings new negatives with it, but these are quickly minimized, favored for the positives in the quest for a “cure”. Disability positions the body as a passive object, a problem that must be solved. Being disabled, being sick, I’ve spent a lot of time in doctor’s offices. I’m beginning to collect the ephemera and charts that these visits generate and work with them in my art. I love that these documents and images are a medical portrait of my disabled body, one that contrasts sharply with the normal, able person that society believes I am.
I’m thinking about the way that W.E.B. Dubois wrote of a “double consciousness” when speaking of race. I feel that something similar can be used to examine the double lives that many disabled people lead. As a marginalized group, we are imbued with a “second sight” that allows us to see ourselves within the socially constructed ideology of the disabled (1897, para. 3). We see ourselves through the eyes of others, and we feel ashamed. This socializing of disability is fascinating to me. Crip culture has grown from this dichotomy and actively works to change public perceptions and reclaim disabled identities. It feels important to me here to clarify what I mean when I write “crip”. Carrie Sandahl explains: “The term cripple, like queer, is fluid and ever-changing, claimed by those whom it did not originally define...The term crip has expanded to include not only those with physical impairments but those with sensory or mental impairments as well” (2003, p. 27). While there are some who feel that the term crip should be restricted to those with physical impairments, I use it in this essay to mean disabled bodyminds with a wide range of disabilities as Sandahl suggests.
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We all have our own versions of what disability looks like. These images come from popular media and people we know. Disability looks like Jillian Mercado at New York Fashion Week and Selma Blair at the Oscars. It's One Flew Over the Cuckoo's Nest and the Fault in Our Stars. For me, disability looks like long blurry walks in the woods. It looks like Lucio Fontana’s slashes and Tracey Emin’s bed. It looks like Bob Flannigan hanging from the ceiling above a hospital bed and Viktoria Modesta’s glowing prosthetic leg. It looks like the Venus de Milo and her forgotten arms, it looks like hospital visits and disheveled beds and abstract Crip joy. It looks like friendship. Scars. Soft curves. Hard edges. It looks like my bed.
My point is, no aesthetic ideal is singular. My visual understanding of disability will always be unique to my experience. I am a disabled artist so I see disability in art even when it was not intended. Wandering through an art book fair with another disabled friend, we find disability aesthetics in places they were never meant to be: a book on the design history of chairs called Be Seated, a book about cognition titled Blind Faith. This essay is not intended to be a directive; this is not the definitive way of understanding Disability Aesthetics, but rather a personal manifesto of how I view art, disability, and the world around me. To that end I have developed a list of guidelines for disability art and aesthetics.
Guidelines for Disability Aesthetics
Work does not need to be visual
Work does not need to be aesthetic
Work does not need to be made by a disabled artist but must be informed by or in reference to the lived experience of being disabled (not a secondhand experience, i.e. a caregiver or family member to a disabled person)
Not all art by disabled artists is disability art
Not all art that relates to disability is disability art
Disability art is underpinned by the experiences of being disabled
I struggle with this word, aesthetic, because I don't know how to make it fit the Disability Art that I know and love. Disability is intrinsically beautiful, but beauty is not a tenet of disability art. Disability Art transgresses beauty; it is bigger, more complicated than that. Disability Art grows from a lineage of ugly laws, physiognomy, the very basis of the medical system, remnants reminding us that beauty is not a sociological framework for disability.
This is not to say that disability cannot be aesthetic, only that beauty is not intrinsic to Disability Art. Disability aesthetics can be downright ugly. I frequently think of the work of Otto Dix for example: Dix's paintings interrogate the disabilities of World War I veterans. His work often features men with disfigured faces (Skin Graft, Transplantation, 1924). His paintings may not be pretty, but they are realistic. Do these works not demonstrate an ugly aesthetic of disability?
These aesthetic ideas can be further complicated. Ugly, vulgar, violent, repulsive. Words that have been used to describe disabled bodies for centuries. This language requires us to ask: whose bodies are legitimate? Whose bodies are triggering?
This is an aesthetic that is constantly evolving, and resists being pinned down. Disability itself is an experience that is constantly changing, socially, medically, and artistically. In 1937 Joseph Goebbels, the Nazi minister of propaganda, ordered the creation of an art show titled Entartete Kunst (Degenerate Art). This exhibition was to be a contrast to the Aryan curatorial masterpiece The Great German Art Exhibition (Große Deutsche Kunstausstellung). The Degenerate Art collection comprised over 16,000 works that the Nazi party deemed “degenerate”, that is modern art, as well as any work depicting bodies that betrayed the Aryan ideal (disabled, people of color, different body types, and of course, Jewish). Reality is, in curating this show, Goebbels created his own aesthetic ideal of disability.
It feels intrinsically wrong to credit Goebbels with doing anything remotely worth valuing (and mind you, his aesthetic was a distinctly problematic one), but as a disabled Jew, I know that power is often born of trauma. This is one of those cases. In the catalog for Entartete Kunst the works containing disabled bodies were described as a “spiritual or racial idea envisioned by ‘modern’ art...the idiot, the cretin, and the cripple”. The pamphlet goes on to read: “where these ‘artists’ have depicted themselves or each other, they have always chosen to portray themselves with cretin-like faces and figures” (Kaiser, 2012, p.56). This collection of art is what I like to call Disability Art. Capital D, capital A. I use this capitalization of the term as a signifier of disability art that was always supposed to be disability art. Work that was made, as the Entartete Kunst collection was, with disability as a central tenet of its creation.
I wonder how an artist or a work of art can become part of the canon, who decides what will become history and what will float away. But I also believe that canons are not stagnant, that they can evolve and change as society does. The canon of disability art is not based on the works of disabled artists. It has grown from a lineage of disabled bodies and disability aesthetics. The aesthetics of pain, of disfigurement, of caregiving. The aesthetics of difference, access, and community. The aesthetics of change. Disability aesthetics are built from a multitude of visuals and languages.
Disability and art are so deeply intertwined for me that I can't separate them. Art history, cultural history, personal history, all twist together and bind into a single trajectory that leads through the shadows of disabled history to the artist that I have become. I’m not interested in the common narratives of disability in art: the stories of overcoming, the tortured artists isolated by their illnesses. These stories are flat, one-dimensional clichés. The story that I want to tell is my own, one of reckoning with mortality. I approach my work with a sense of morbid optimism. Life is short, make art about the things that you care about.
I feel that a facet of my role as a disabled artist and writer is to bridge the divide between the private disabled spaces that I inhabit and the public spaces that I share with other people. As an artist I do this by creating documentation of these private moments, forging insight, a visual guide to navigating my experience. My practice is always, foremost, about creating the work that I need. Some days it is a need for expression, a visual answer to a question that has worked its way into that part of my brain that I can’t ignore and desperately seeks a formal solution. Other days my work is a form of therapy, the act of photographing allowing me to work out my own thought processes. Much of this work will never see the light of day, and that is okay. My work has never been about production, just processing. My photographs are, for me, a method of self-forgiveness.
As a photographer I am immersed in the visible. As an invisibly disabled artist I am constantly searching for the edges of that vision. Frida Kahlo painted her pain, depicting her spine as a shattered Ionic column, ripping her heart from her own chest for all to see. Bound to the existing visible world, I work in a quieter manner. I cannot rip out my own heart, as much as I might like to some days, so I use medical imaging – x-rays, MRI’s, sonograms, EKG’s. These images are a new kind of self-portrait. One without the sentimentality of a photographer and editor. One where I literally lay myself bare. Stories about my life in a language I cannot understand. A scientific exploration of the fragility and power of the human body.
I am fascinated by the idea that the disabled body is somehow incomplete, somehow less than human. I like that tearing my printed photographs instantly connotes a traumatic experience; jagged white lines against dark paper. I began doing this in my studio out of frustration. I desperately sought perfection and I tore the work that did not meet my own high standards. It was only when I saw the torn pieces on my floor that I began to understand the power that they hold. In one finished piece, my own naked body mimics the twisted torso of the Venus de Milo. The print has been torn diagonally from left thigh to right ribcage, acknowledging the interior break and the history of disability in my work. The Venus is often praised for being the “epitome of graceful female beauty.” There is no question of whether her long lost arms make her any less complete.
Linda Nochlin describes fragmentation as “a loss of wholeness, a shattering of connection, a destruction or disintegration of permanent value” (2001, p. 23-24). She was speaking of modern art, but her analysis is spot on in a different regard: the medical industrial complex does these exact things to disabled bodies, breaking us down and devaluing us. Disability art flips (and crips) this definition, asking why a body must be whole to have value, why fragmentation must mean a severing of connection. Perhaps the most well known example of this is Frida Kahlo, painting her own fragments into reality. In pieces like Henry Ford Hospital (1932) or The Two Fridas (1939), she takes her internal physical pain and renders it into a visual realm. Marta Zarzycka writes, “by performing a dissection of the live body, by pulling internal organs, bones and veins outside, Kahlo became a fragmented assemblage of parts and their malfunctions” (2006, p. 81). This fragmentation mirrors our lived crip experiences, Zarzycka notes, because “pain in Western medical science often invites fragmentation: the body is dissolved into the representation of its parts, one or more of them hurting. Only when these parts hurt do we recognise their autonomy and separateness as heart, liver, kidneys or stomach” (2006, p. 81).
This fascination with fragmentation has led me to new territories. I am interested in the materiality of photographs. The files, the raw data, offer endless potential for manipulation. As with the torn prints, I also work with transforming the image through different media. I print the photographs on plastic and fabric, I hide them from view behind translucent curtains, I project them through space. I take the digital negatives and make cyanotypes from them, letting the material dictate the final product. I love the way that Sally Mann lets the chemicals on her wet-plate collodion negatives infiltrate her images, and I do the same with my cyanotypes. I destroy things and I let nature do the same.
In one of my most expansive projects I created a durational work of art in the forest surrounding my childhood home in Vermont. At the beginning of summer, I placed black and white fabric prints of my body in the forest, and documented over the next few months as they slowly disintegrated. I feel most comfortable in this place: barefoot, muddy, scratched and raw. I know the way that the rocks shift beneath my weight, the strength of the tree roots I use to climb. I know which plants are poisonous and under what conditions. I know the feeling of the air before a storm. Being disabled usually negatively affects the way that I negotiate space, but in this place where I first learned how to walk and how to see, many of those barriers vanish. As the summer ended, I retrieved my photographs from the trees and streams where they had become imbedded. I had watched them as they changed from pristine blacks and whites to faded browns and greys. Edges frayed and coated in pine sap, the work finally felt whole.
To me these works are about the restoration of body and place. My body can never be restored, only conserved. To quote Eli Clare: “[Cure] grounds itself in an original state of being, relying on the belief that what existed before is superior to what exists currently…but for some of us, even if we accept disability as damage to individual body-minds, these tenets quickly become tangled, because an original non-disabled state of being doesn’t exist.” (2017, p. 15) These photographs represent more than their physical forms. They are wind-battered and torn, but they are still me.
Disability art, crip artistry, disability aesthetics… these ideas haunt me. They hover around me like ghosts, begging for their problems to be resolved. But the deeper I fall down the black hole of theory, of questioning, the more entangled I become. The reality that I am just beginning to accept is that perhaps I have no solutions, that perhaps there are none to be found. This is the gift and the curse of a constantly evolving culture and language, that there is no right answer. For now this is the best that I can do and perhaps, for this disabled body-mind, that can finally be enough.
Works Cited
Clare, E. (2017). Brilliant imperfection: Grappling with cure. Duke University Press.
Du Bois, W. E. B. (1897, August). Strivings of the Negro People. The Atlantic. https://www.theatlantic.com/magazine/archive/1897/08/strivings-of-the-negro-people/305446/
Garland-Thompson, R. (2002). The politics of staring: Visual rhetorics of disability in popular photography (p. 56-75). In Snyder, S. L., Garland-Thomson, R., Brueggemann, B. J., and Modern Language Association of America. Disability studies: Enabling the humanities. New York, NY: Modern Language Association of America
Kaiser, F. (2012). Degenerate art: The exhibition catalogue guide in German and English. Ostara Publications.
Nochlin, L. (2001). The body in pieces: The fragment as a metaphor of modernity. Thames & Hudson.
Oxford Languages. (n.d.) Aesthetics.
Sandahl, C. (2003). Queering the crip or cripping the queer?: Intersections of queer and crip identities in solo autobiographical performance. GLQ: A Journal of Lesbian and Gay Studies, 9(1–2), 25–56. https://doi.org/10.1215/10642684-9-1-2-25
Young, S. (2012, July 2). We're not here for your inspiration. Ramp Up. https://www.abc.net.au/rampup/articles/2012/07/02/3537035.htm
Zarzycka, M. (2006). Now I live on a painful planet. Third Text. 20:1, 73-84. DOI: 10.1080/09528820500472555