Chapter 2: Disability as Grounds for Creative Production

Chapter 2: Disability as Grounds for Creative Production

Section 1: Introduction

In Chapter 1 I discussed art strictly by people with disabilities (PWD) and how their disabilities and chronic illnesses directed, like a compass, their artistic practice in unique ways.  That analysis can be helpful in understanding what artistic practice is and what the fine arts are.  But what words should be use to describe art where disability has been used as grounds for creative production?  In other words, as a muse to make art by.  I say the best term is “disability art” for heuristic purposes.

Who might rise to the challenge and make such art?  It surprised me that many people assumed my exhibition and book project was about only artists with disabilities that make art about disability.  When I explained that there is disability in art by people without disability (something obvious to me), it was fairly surprising to even those highly educated in the art world.  So it is that disability as a creative muse is one of the somewhat secret places where work about disability by people without disabilities exists alongside works by PWD.  But disability art is a rather broad area to cover and it easily tangles up conceptually with disability as an aesthetic.  Hence, I have found it necessary to discuss disability and aesthetics on its own in Chapter 3.

In this chapter, I will suggest the term “disability art” would best be used to speak about works with the marking characteristic that the creator seeks to represent disabilities or impairments, achieving this goal as a detectible utterance within the work.  I will limit my discussion here to works presented in the exhibition A Somewhat Secret Place by two writers and three artists.  These works are by a diverse group: three who identify as having disabilities, one who identifies as having a chronic illness and an able-bodied person.  I will speak about the ideal observer and the difficulties of contemporary attitudes toward disability.  I will speculate that the general misconceptions and negative attitudes about PWD are impediments to a proper reading of the meaning a work of disability art.  I will consider issues that stem from this as accessibility issues and social dynamics, offering my own feelings on possible solutions. As a counterpoint, I will cite one of these works and show the difference between inspiration and true representation. That is the schism between intention in the process of creation and the work within the hands of the public. I will suggest that representations of disability, which I call disability art, and an aesthetic of disability overlap when the actual disabled, impaired or chronically ill body is manifested in the work as a physical or visual representation. This is because impressions of the body have what I shall call an aesthetic stickiness.  The totality of the human form evokes nearly immediate unconscious judgment. So it is that a representation of disabled bodies acts on viewers through their bodies and their concepts of what bodies should be. This is true in representation of disabled bodies real, imagined or anthropomorphized.

I extend representation to anthropomorphized objects because if we respond to an object as if it is a disabled body, this is a question of aesthetics and therefore linked to how we represent the sensation of that object. Tobin Siebers brought this to light in the way viewers observe vandalized art as if the works were wounded bodies. He notes that the work’s utterance changes when the work is vandalized.  Because of this, Siebers says vandalized objects can be experienced as disarmed or disabled, their prior function removed.  He then brings up I think the most interesting point of all, which is that the creators of the work’s new utterance as vandalized–the vandals–are often themselves disabled by mental illness.[i]

“Disability art” ought to be use to connote heuristically any work of art that represents a disability.  So what does a representation of a disability in art, literature and performance mean?  First one has to identify if a disability is present in the work by establishing parameters to define disability.

If we say that disability is any variation from the medical model of normal brain and body function then we would also consider conditions that are thought of as additional abilities, such as in the case of abnormally enhanced sense modality in perception.  Sense modalities are the nervous system’s processing centers and paths for perceptions of hearing, smell, taste, touch (including proprioception, the feeling of the body) and vision.  Synesthesia (meaning joint perception) is where the perception of one modality informs or alters another modality causing an (often emotional) understanding of a stimuli in a unique associative way.  Notably these perceptions are both truly experienced and are consistent.  So if I were to say the word “four” or play a middle C and someone sees blue, or feels muggy or tastes vinegar, that would be the synesthetic perceptions they would have every time.  Let’s think about Lisa J. Emerson’s take on synesthesia; she writes:

Synesthesia is generally not seen by synesthetes or non-synesthetes as a disabling condition. There are circumstances when it can be for some people (e.g. such as feeling [nauseous] when hearing windchimes), but it is more common for synesthetes to report their synesthesiae as pleasant (e.g. seeing blue when C is played on the piano).  Of course, each person usually considers their synesthetic perceptions normal.  For these reasons, most synesthetes would not want to part with their synesthetic perceptions.[ii]

Notably, there are different kinds of synesthesia some of which cause pain and therefore are often thought of as impairments.  Secondly, other forms of synesthesia seem to be thought of as augmentations to a lived experience and in this regard normal for the synesthetes, which is not unlike the feelings of some Deaf people in regard to their disability identity.  But very few non-Deaf people would regard the Deaf as persons without a disability.  Thirdly, Emerson’s statements are a bit misleading. She defines disability tangentially, as something that inherently needs a cure as one would want to part with it, which is a rather narrow view.

I cannot agree that if something does not feel like an impediment then it is not disabling.  The social model of disability, developed in part by Mike Oliver who first coined the term, recognizes disablement in: systemic barriers to access; negative attitudes about what constitutes normal or acceptable bodies, minds and behaviors; the cultural and legislative exclusion by society (intentionally and unintentionally) of people with impairments.[iii] The social model neatly moves the burden of nonconformity off of the individual.  The social model of disability rejects that the diagnosed impairment(s) is inherently or must be disabling.  It clearly has the implication that disablement is a special problem of oppression.  Thus, under the scrutiny via the social model, I believe variations from the medical normal that feel “desirable” could still be considered disabilities because of the framework of oppression Oliver describes.

For example, my visual impairment and learning disability do not feel disabling to me when my environment is suited to my needs and the expectations of normal productivity and behavior is not imposed upon me.  On the other hand, I feel disabled when the environment is not easily accessible and my way of existing in the world is measured alongside non-disabled people. This is when I am treated in a dismissive manner, disabling me.  Similarly, a lot of people with synesthesiae of any type are treated as though they are making the whole thing up and thus are treated as “crazy;” or, they are believed but still treated as “crazy” or as a novelty because of their “altered” or “deviant” perception.[iv]  Because this distinction is so unclear socially, I would say that even conditions that could be thought of as superhuman can often be thought of as disabling through scrutiny via the social model. Therefore, these conditions could fit within my heuristic definition disability art.

This is not to say one should decide the maker of a given work of disability art should be called disabled; rather, the depiction they produce, if containing attributes of some so called super-human traits that could be found to be disabling when analyzed in the social model, then the art should be said to be disability art.   Like how an image of a baby with abnormally strong muscles performing a one handed push up functions the same as freak show photography and also is truly a piece of medical curiosity photography.

Disability does not inherently mean intellectual, mental, sensorial or physical disadvantage.  Rather, for the purpose of thinking on the term disability art, it should mean a biological straying from the medical standard of normal. Our society–which abhors nonconformity—reacts, disabling such persons through stigmatization to varying degrees.  Thus I posit that by including so-called “pleasant” conditions within the term disability art, we also would change the overall perception that disability inherently means disadvantage or deficits within a lived experience.  I would not want to have someone fix me. This is my normal and as we will find, my view is much like that of writer and artist Jody John Ramey who says, “I have many disability labels and they add much color to my personality.”  That statement shows he would not want to be changed. He has accepted disability as a positive part of who he is.  For me, the differences in the way I learn and see bring much to my life but it is not the medical normal.

Words change over time and the word disability is clearly changing.  My sense of this is that art theory as a social agent acts on culture in a reciprocal dialog.  Therefore, art theory has a great opportunity for cultural introspection if this is discussed or at the least acknowledged.  I hypothesize that there is such a negative attitude in the arts about disability that works of disability art are horribly dismissed or misinterpreted.

In my call to artists I chose to not make a distinction about what a disability or impairments was, for fear I would have been imposing identities onto those artists in my case study. But here I am forced to label the disability regardless of feelings and without the hindrance of what it might do to a study since my sample has been gathered.  This does not mean I would ever call someone disabled who says they aren’t.  I am only going to do this with works of art, literature and performance, because to say a painting or text has the presence of disability is not going to disrespect any person. The criteria I called for was “Art and literature that shows or represents a disability through subject matter and/or artistic practice.”  In actuality what I was hoping for was representations.  But representation covers a lot more than simply intention; it also covers utilizing the aesthetic response people have to disability and how elements are used to make manifest disabilities that are not easily understood by outward signs such as in the case of a chronic illness like multiple sclerosis (MS).

Now that we have a broad grasp of what a disability is, we can ask: What is representation?  It is a sort of sensing something then recording it with the intent or result that another person experiences it within a work of art or literature.  One could say it is a capturing with the intent to report to an observer for the observer’s inference to be something like the object depicted.  It is to describe by any means or material–be it language or art mediums–a particular thing.  That is to say, object of any sort such as being, idea, state of being or an inanimate object.

Direct representation is noting or recording perceived aspects and constituting these attributes into a form which is to be held not as, but as like, the thing observed. Thus it is always a sort of selective mimicry.  It is within this sort of mimicry that the judgments of the creator about what is important and perhaps their unconscious biases (positive or negative) about the object that they depicted become apparent.  

Representation also comes in metaphoric forms where characteristics of different objects are held in constellation to make a sensation of the subject that is to be represented.  Take for instance, Endure MS, the 2009 performance-based fundraiser by photographer Heather Zinger.  She took the object of MS as an invisible lived experience as her subject.  Zinger used a skeleton and a rope tied to her body to represent it for a week.  She noted on a blog the many challenges the skeleton offered her, never really pointing to these as actual attributes of the subject of the work. A representation of disability used in Endure is not the characteristics of the impediments the illness causes or the social disablement; rather, it is the psychological feeling of it as a holistic sensation poetically inferring experience. The apparatus actually disables Zinger’s body with its weightiness and causes judgmental gazes.[v] Therefore, it fits best in a disability aesthetic analysis. This is metaphoric, would you not agree?  I will speak to this in Chapter 3 as this work inherently refers to the body.

The success of a representation is not necessarily that it notes accurately all characteristics of the object of the representation.  Because of the subjectivity of the creator and the impossibility of completely replicating something, representation teaches us about the object secondarily and the creator firstly.  Some challenge this through making work that is consumed by representation through realism.  Still, the selection of what the creator represents shows their subjectivity, even if it is as remarkably vapid as a bowl of fruit.  More so it teaches something about how the creator came to represent the thing, i.e. the society they live in and their views of it.  Knowing this, we the observer can understand something of their mind and time.  John Berger explains this as, “Images were first made to conjure up the appearance of something that was absent.  An image becomes a record of how X had seen Y.”[vi]  He notes that representation then has a sort of historical substance and awareness of the individuality of the creator.  Surely the representations of disability within this chapter will seem dated when we meditate on them from far in the future and this will have in some small way been my own act of representation of what representation is of disability in the arts today.


Section 2: Disability as Grounds for Creative Production in Literature: The Work of Jody John Ramey and Carmen Papalia


a. Jody John Ramey Biography

Jody John Ramey is a social justice advocate, author, artist, crafter, choreographer, musician, performance artist and family man.  He was born in 1973 in Vancouver, Washington, which is where he resided at the time of his application to A Somewhat Secret Place.  He has a Bachelor of Arts in Social Science focusing on History and Sociology (1998) from Washington State University and graduate degrees in theater and library science.

Because he is foremost altruistic in all his endeavors, central to his life is his joy in using the arts to increase literacy and to facilitate a rethinking of our everyday social reality.  He joyfully says, “I have many disability labels and they add much color to my personality.”  He is therefore clearly disability-positive, entrenched deeply in the disability pride movement. When he lived in Vancouver, he became quite a celebrated part of our Portland disability community, participating in festivals and other events for and by people with disabilities. Mr. Ramey reports that his diagnosis of autism came in his twenties after many other diagnoses that he disagreed with.[vii]

He currently lives in Chicago with his wife, Emilia Murry Ramey, and their infant son.  Among their many achievements with the book they co-authored, the only one of its kind for years, Autistics’ Guide to Dating: A Book by Autistics, for Autistics and Those Who Love Them or Who Are in Love with Them, they have toured, inspiring other autistics and PWD to self-advocate for their love lives and to own their sexuality and health. It is immeasurable the impact he and his wife have made on so many lives. Mr. Ramey is finishing his PhD in Disability Studies at The University of Illinois and is to graduate this summer with the class of 2013.

Biography written in collaboration with Jody John Ramey

b. Autistics’ Guide to Cooking Yak Tenderloin Steaks

By Jody John Ramey

Preformed 7/9/2011

Yak meat is a wonderful addition to the diet if there is an inexpensive source of yak meat available, or an inexhaustible source of money.  Yak can be very expensive in certain parts of the world.  Yak may also be a challenge for many people to prepare.  To prepare a yak meal, one cannot put a yak tenderloin into a skillet, cook it for a specific amount of time, and call it done.  There are better ways to prepare meat, which are achievable by people with and without disabilities.  It may be unexpected that an Autistic person at the lower end of the economic spectrum would have anything to say about cooking high quality food.  However, one should keep in mind that cooking can be a form of accessible recreation.  Other forms of recreation might be out of reach due to financial hardship.

Begin with a fresh onion.  Do not remove the skin.  Just chop the onion in half. Take the onion and vigorously rub the bottom of the planned cooking surface with the exposed end of the onion.  This will help to prevent the steak from sticking to the pan and the juice of the onion will flavor the meat.  Turn the stove on to low heat and place the steaks on to the cooking surface.  If the steaks are frozen turn them multiple times every few seconds till they are thawed.  The meat may be juicier if they are cooked frozen. After the fork can enter the meat, pepper (grind the pepper) and salt the top side of the steak.  Wait till a good hint of cooked meat smell emanates from the cooking surface and turn the meat. If color is a better indicator, wait until there is a slight hint of darkening at the surface, where the meat connects with the cooking surface, then turn the meat. Add salt and pepper to the other side of the steak. Wait again in a similar manner, then turn the meat.  The goal is to have the steak very pink.  Well-done yak is not a culinary delight.  Turn the meat twice more after it sits for a short while on each side. The steak will not sizzle, and it will cook quickly.

If yak meat is not available, lamb is also a meat that should be very pink, but it will be prepared in a very different manner. The fat content of lamb is much higher. Beefsteak will be browned more than lamb, and pork should not be pink at all.  Preparing meat is something that should be done with care if it is to be a succulent treat.

Does this mean that a person will be a great chef because they can prepare a fancy meal?  Not necessarily.  There are all kinds of stresses in a commercial kitchen that are not found in a personal kitchen. In the home cooking can be done in a variety of ways.  Any child, with or without disability, can develop into a creative and successful adult if given the tools to explore.  Success is not always financial and keep in mind that exploration can be done in the kitchen just as easily as it can be done while writing directions on how to cook yak tenderloin steaks.  It may be apparent that this is not just an article on how to be a better cook.  It is also an article on how to think about disability and the disabled.  To those who have the experience, no more explanation is necessary.  To those who do not have that experience, no explanation will suffice.  I eat, therefore I live.

Photography by Alexander Daniel  Autistics’ Guide to Cooking Yak Tenderloin Steaks Reading  2011

Photography by Alexander Daniel
Autistics’ Guide to Cooking Yak Tenderloin Steaks Reading

c.  Representation of Variation

I first met Mr. Ramey during my internship at the Disability Art and Culture Project (DACP). Mr. Ramey was featured in the DACP’s Bone Translations Disability Pride Art and Culture Festival (April 2010).  On the evening of the dress rehearsal of Intersections, a collaborative performance piece, I saw a tall slender man skipping in circles, periodically flapping and flinging his arms like propellers.  It looked like a novo rendition of the chicken dance meets Tina Turner’s “Proud Mary.”  His willful eyes were wide and a plastic grin stretched across his shiny, pale face.  I had over six years of dance practice in my childhood and a grin is not something I had ever seen a dancer sport whilst warming up.  Nor had I often seen a beard such as his on a dancer.  For that matter, none of the dancers seemed to be the convention by traditional theater standards in their body size, grooming, ability, nor attentiveness to formal technique.  For me, Mr. Ramey’s joy over a warm up and the different grooming standards and body types were both puzzling and interesting. It all was certainly nothing I had been exposed to before. I did not “get it.”  I feared I was beginning to think the whole festival of poor artistic quality by the looks of the crew.

It seemed there was an aversion to speaking about the whole thing in intellectual terms and bringing a conversation to the works having some sort of specificity to it.  But that little moment was one of many that made me question the sort of attitude I held. I wanted some of my fine art intellectual world to be there in the room. I wanted to understand it.

The next day I ended up vending merchandise for Mr. Ramey when he and Mrs. Ramey needed a fill-in on their table. A woman asked me about their book, saying “How can someone like my child date?” I, having not read it, pointed to the book where Mr. and Mrs. Ramey are depicted holding hands and said, “Well they’re married, so maybe you should buy it.”  I do not think I was born for sales.

Through this minor interaction I realized that to a large extent PWD are raised with different social pressures than people without impairments, and it is this that is disabling. Specifically, there are assumptions about our ability to achieve life situations, like romantic relations, which fulfill our individual needs for happiness.  Such low expectations contribute to a desexualization by way of assigning labels to PWD as un-mate-able or un-reproducible.  This happens mostly on a personal level, subtly, through little thoughts like, “Oh my child has a disability; ergo, they will not give me grandchildren.” But there are signs of this on a grand scale such as worldwide mass forced abortions and sterilizations of PWD.

Take for example the disturbing controversy of Elisa Bauer’s pregnancy. Because Bauer had a disability, her choice over her own reproductive rights was not taken into consideration, leading to a court battle. This was reported on The Washington Post’s Community Page:

Judge Egan Walker reportedly asserted, “I have inherent authority to [override the wishes of Elisa’s parents] because the court appointed the guardians and they are agents of the court.” The court-summoned doctor recommended abortion and sterilization in no uncertain terms, stating, “End this pregnancy and tie her tubes.”[viii]

It is notable that on November 14, 2012, Judge Walker declared that it was Elisa’s wish to have the pregnancy, so in his thinking, the abortion ruling could not be made. The fact Social Services took this case to court is where one can perceive the underlying attitudes that pervade culture.  It is a cold reminder that attitudes discounting PWD as human beings deserving of basic human rights to choose to pursue, as we choose, love and happiness, are clearly alive and well.  All of this, is not to say we, all PWD, must or could have children, to be happy.  Rather I mean that it is the assumption that we cannot or must not that is harmful.  It is not that I had been unaware of these attitudes that cut down the capabilities of PWD.  Let’s just say that with my cane in a bar, possible suitors don’t readily approach me “for conversation” and it is a bit of a different story without my “blind stick.”  Until that impromptu conversation while selling books, I had never considered that this too was the experience of people with impairments that were not like my own.

On that evening of the performance, while making change, the jewel came to me. The question: Are the minds, therefore experiences, of autistic people as different from person to person as sight is different for each blind person?  Clearly, yes, it must be different from person to person.  This led me to ask one of the five questions that formed the foundation for my A Somewhat Secret Place: Disability and Art project.  What is it called when art works are about representations of disability? And as a natural follow-up question, How would we talk about these works and identify them? I find it funny that this felt like a stroke of genius at the time.  It seemed to me that what was not “in the room” was an intellectual questioning about what it is to represent a disability.  During the festival there was a smattering of conversation on what it is to beautify disability or if that was helpful to the project of disability studies or in support of disability pride, but representation and aesthetics as words lost their meaning as they were used interchangeably.  I hungered for a fine art conversation on the art around me.  Unfortunately, the fine art community did not seem to understand my desire to have a conversation along these lines. I was told by a few colleagues in my fine arts community that I really was wanting to participate in the outsider art dialog. I found this dismissive attitude rather unsettling, since it makes the assumption that PWD are not active agents in the art world.

In service of answering my main question of how one might represent the autistic mind, the Rameys’ dating book does a really good job of offering a definition of what the autism spectrum is and the challenges it presents to social interaction.  But it does so in quite a different way than this cooking guide in that for the most part the book is straightforward and instructional.

On the other hand, what is remarkable about Mr. Ramey’s Autistics’ Guide to Cooking Yak Tenderloin Steaks is that it represents the thinking of an autistic person through the act of explaining a simple task.  Here Mr. Ramey shows his pride over his disability identity and speaks to the social and economic reality of autistics as disabled people.  While this piece shows a sort of pride for being autistic, it is remarkably unpersuasive politically speaking.  The primary function is representation of the autistic way of thinking through a problem, under the guise of instructing a task. It does this by going from the specific to the general and it easily takes brief side tangents much like the way an autistic person thinks.  This is not to say that work by an autistic person is inherently a representation of an autistic’s thought processes. I raised this distinction with Mrs. Ramey’s work in Chapter 1. In Mr. Ramey’s “guide” there isn’t a recipe because that is not the point of the work.  I appreciate how Temple Grandin describes her thinking as a person on the autism spectrum.  She writes:

A Web browser finds specific words; by analogy, my mind looks for picture memories that are associated with a word. It can also go off on a tangent in the same way as a Web browser. […] I use logic to make all decisions; my thinking can be done independently of emotion. In fact, I seem to lack a higher consciousness composed of abstract verbal thoughts that are merged with emotion.[ix]

Mr. Ramey’s thinking, or mind, is demonstrated in this essay through his writing technique.  He explains the process from specific aspects to the general aspects of cooking: yak meat to more common substitutions, personal kitchen to professional kitchen and individual PWD cooking to social discourse on disability.  There is originality to the method he instructs, somewhat unconcerned with the standards laid out by others.  For instance, The Art of French Cooking does not cover yak meat, but Julia Child writes about some techniques that are in contradiction to his. Traditionally held western habits of preparing meat (such as always thawing it before preparation) are disregarded in Mr. Ramey’s instruction in favor of an idiosyncratic method of cooking. This is a sort of indicator of an internal logic about emotional and social habits to conform to the conventions laid out by society.

One of the most interesting parts of this piece for me is how Mr. Ramey chooses to dismiss readers who would not already understand disability as a lived experience.  It seems stubborn and unconcerned for the reader (or ideal observer) that may be hoping to learn about people with autism.  I do not believe he does this knowing that it may be a turn off; rather, he does it as an affirmation to himself.  If he was to go further to make this into a command of a sort, telling us we must think in a certain way, I would think this work would more rightly be called a political work and then fit in to my analysis in Chapter 4.

One could also speculate that while this is a sort of depiction meant for those on the autism spectrum, it is also meant for all people since he submitted it to this project.  This project is couched not in disability culture but fine art culture.  Mr. Ramey’s adherence to an unemotional logic is evident in the last statement: “To those who have the experience, no more explanation is necessary.  To those who do not have that experience, no explanation will suffice.”  One could understand this as him highlighting another example of the characteristics that make up his thinking as a person with autism.  But one might also conclude that this representation says something about all minds on the autism spectrum.  It does not.  This is not a problem of the ideal observer as I have witnessed but a sign of the kind of dismissal that observers jump to in the gallery.  One aspect I observe from the disability art in this chapter is that every representation has specificity to it. That includes work where the utterance is unclear or the disability lived experience is not that of the creator.  Of course this is logical since the progression of modernism in the arts has made it abundantly clear that there is not one worldview to which art of an age must adhere.

As I observed guests to the gallery and engaged in a discourse, I saw a trend of temptation. A temptation to take what they learned from a work as the be all end all of what the particular disability, with which they had no experience, must be like. I think this is odd since no one looks at a photograph of a city and thinks, “When I go there I will be smiling like all the people in the photograph,” or, “All people there are always smiling.” That would be absurd. As it would absurd to think of Mr. Ramey’s Autistics’ Guide to Cooking Yak Tenderloin Steaks and the characteristics I have perceived and believe that they are the singular and whole autistic lived experience.  It is merely a representation, which as I stated will never capture everything.

d. Carmen Papalia Biography

Carmen Papalia is an artist and writer that produces socially engaged projects that are initiated by, and as he says “informed by his body,” which one could understand as inspired by his blindness and other sense perceptions. Often based on lived experience, Papalia’s work is participatory and creates the opportunity for productive conversation on topics ranging from the accessibility of urban design to the role of slapstick in the everyday. Papalia received his MFA in 2012 from the Art & Social Practice program at Portland State University.

Papalia is a co-founder of the Memewar Arts & Publishing Society—a not-for-profit organization in Vancouver, British Columbia, that is responsible for three main projects: Memewar Magazine, the Short Line Reading Series and the publishing imprint MemePress.[x] His writing can be found in journals such as West Coast Line, sub-TERRAIN Magazine and Disability Studies Quarterly. He has contributed work to the Open Engagement 2011 and 2012: Art + Social Practice conference.

As part of Portland State University’s Spring 2011 Chiron Studies course offerings, Papalia facilitated the “Writing Through the Body Workshop”—a ten week creative writing course that introduced beginner and intermediate writers to a number of strategies for addressing their bodies in their autobiographical poetry and prose.[xi]  He currently travels internationally, participating in writing and art residencies and performing his work.

Biography written in collaboration with Carmen Papalia.

e. I Want (Original)

A Poem By Carmen Papalia

Preformed 7/9/2011

I want the International Symbol of Access to be more accurate.

I want a supermarket employee that will read every label and answer every question.

I want all of my DVDs in DVS.

I want the cane and the hat to be “my” thing.

I want to star in a short film set in Paris in which Natalie Portman is my love interest and I am visually impaired.

I want to play with a handicap.

I want to be noticed for content not context.

I want to qualify for a mortgage.

I want to fill a diversity quota.

I want to be mistaken for a paralympic athlete.

I want my friends to buy me a Braille Playboy as a joke.

I want to watch summer blockbusters.

I want to address the wrong person and for it to seem intentional.

I want to use the library.

I want everyone to know when they should help me and when they should not.

I want to be able to choose what I can see.

I want to curate an exhibition that “pays tribute to the resilience, creativity, and the civic and cultural contributions of Canadians with disabilities”.

I want to be offered freebies for being disabled.

I want to be the face of blindness in North America.

I want to re[-]appropriate the word “blind” so it can be seen as something positive.

I want to drop witticisms like “hear you later”.

I want to offer expensive seminars on how independent I am.

I want poor people to think that I’m worse off than they are.

I want porn sites to be accessible.

I want this to be in a literary magazine and not in an academic journal.

I want to ride a media circuit.

I want to be prayed for while shopping at Banana Republic.

I want one of those gadgets that beeps when a cup is full.

I want to wear a huge sign that reads “DISABLED” when I’m out in public.

I want songwriters to ask me before they use metaphors for blindness.

I want to make a living as a visually impaired writer.

I want to find a way around non-verbal communication.

I want to be recognized as a hero.

I want to meet other people with problems in a mediated setting.

I want to tell the guy from Blind Justice that I wasn’t laughing at him.

I want my visual impairment to help me make friends on the bus.

I want a card that confirms that I am indeed visually impaired.

I want to be the subject of a Just for Laughs gag.

I want to write a column about my adventures in blindness.

I want to walk without a white cane and for everyone to know that I’m visually impaired.

I want to hang out with Michael J. Fox.

I want to talk to people about Critical Disability outside of a conference or university setting.

I want to be a pro at something visual, like archery.

I want my visual impairment to increase the value of my artwork.

I want to donate my retinas to science.

I want an assistant to read my mail.

I want to go for walks without a cane so my neighbours think that I’m normal.

I want first dibs on tickets to see the Blind Boys of Alabama.

I want people that I don’t know to nominate me for an achievement award.

I want everyone that I meet to have an attractive voice.

I want to give a special name to poetry that is written by people who are disabled.

I want to develop a symbol that communicates partial sight.

I want to launch a campaign that focuses on hope, not disability.

I want to wear a t-shirt that sports the slogan “fuck the color blind”.

I want my blindness to make me invisible.

I want to write a song about my vision loss that inspires others to follow their dreams.

I want my eyeball cane to make me the coolest guy at the CNIB.[xii]

I want to use a special bathroom.

I want to work as an actor and for my disability to add an intangible element to my performances.

I want to develop a cutsie word for my disability so I don’t have to say the word for my disability.

I want one of my art pieces to be included in an exhibition of work by impaired artists.

I want a telescopic phallus that I can show off on the bus.

I want people to tell me about their disabled friends and family.

I want my white cane to be a utility knife of sorts.

I want my mannerisms to be studied by film producers while I camp at Bowen Lodge.

I want to receive endorsements from Blind Skateboards.

I want my disability to attract women with fetishes.

I want every film to have an interesting script and dialogue.

I want to wear headphones so I can see museum exhibits.

I want to be the only person with a disability at school and on the bus.

I want to offer a walking tour in which I guide blindfolded participants across busy intersections.

I want to go to Ryerson or York University so I can talk about Critical Disability.

I want to test drive a Ferrari with reckless abandon.

I want to be the lead male role in a Hollywood film that does not focus on my visual impairment.

I want to replace the word “crip” with the phrase “are you fucking kidding?” whenever it’s used for empowerment.

I want the university to pay me for all the time I spend securing accommodations[xiii].

I want my white cane to get me media access at events.

I want to watch the Olympics in HD.

I want to be able to make fun of people who are hearing impaired.

I want an iPod with built-in voice software.

I want more of an inheritance because I’m the disabled one.

I want to live by a transit line.

I want everyone that didn’t talk to me in highschool to ask me questions about my disability.

I want an apology from Don McKellar.

I want my autobiography to be available at airport bookstores.

I want “special needs” support.

I want to celebrate Braille literacy week with events and a free t-shirt.

I want people to talk a bit louder because I can’t see them.

I want a kissing tutorial because I don’t think I’m doing it right.

I want to use my visual impairment as an excuse for cutting in line.

I want every crosswalk to be equipped with an audible signal.

I want to carry a sign that reads “stare too long and you’ll go blind”.

I want to wear huge sunglasses and a talking watch.

I want Shia LaBeouf to play me in a film about my life.

I want the fact that I’m visually impaired to be mentioned somewhere in my bio.

I want to be paid $200,000 a year for discovering how to market to people with disabilities.

I want attractive people to stand in my field of vision.

I want this to be relevant right now.

I want my white cane to get me a 2-for1 discount at the movies.

I want to pull a sack over Daniel Kish’s head and then spin him around and around and around.

I want to star in a film directed by James Cameron in which I portray a blind former marine that is able to see by means of an artificial hybrid body.

I want a dollar for every eye on me.

I want to climb Everest with a team of guides.

I want to use my disability to get me out of legal trouble.

I want to be commended by John Stewart for my strength.

I want a seeing eye monkey that I can dress up in little clothes.

I want a dining experience that combines five star French cuisine with a legally blind wait staff and total darkness.

I want to pretend to be reading from a newspaper at the coffee shop.

I want to rewrite Dawn of the Dead so it has something to do with disability.

I want to be the artistic director of the opening and closing ceremonies for the 2010 Paralympic Games.

I want to write a graphic novel about my disability and then option it for a series on HBO.

I want to be a “blind daddy”.

I want to be considered in debates regarding climate change.

I want to be a piano tuner or a masseuse.

I want a license and insurance.

I want to touch tactile representations of random works from the Louvre.

I want to be marketable.

I want to launch a motivational speaking career in which I teach business professionals how my achievements can help improve their business strategies.

I want to be the first person to do (something) with a disability.

I want to bump into something and start a chain reaction.

Photography by Alexander Daniel  I Want Performance  2011

Photography by Alexander Daniel
I Want Performance

f. Intersection of Disability in the Arts and Disability Art

Papalia presented three works at the A Somewhat Secret Place exhibition. The other two works (a video piece and a performance) will be discussed in the following two chapters.  I Want was read on the day of the opening, concluding the readings for the evening.  It received a vigorous ovation.  Many patrons suggested to me an encore rereading for the closing night’s events. Due to the fact that Papalia’s collaborators, AJ Vittie and Elliott Lummin, drove down for only a few days from their homes in Vancouver, Canada, I sadly could not fulfill any such request.

Alison Osborn helped immensely with this performance. Alison is an active member in our disability arts community, providing audio description services for the blind and low vision among many other services, as her talents are seemingly endless.  During the planning of the exhibition she worked with my other collaborators, taking on the job of Performing Arts Curator.  She worked tirelessly last-minute to prepare the running order and readers for each of our pieces.  She gave special attention to Papalia’s piece, expressing that she believed there were different types of voices Papalia used throughout it.  When we became aware that he would attend and that he would read the last line in the performance “I want to bump into something and start a chain reaction,” she took action.  Collecting from her theatrical community two actors to volunteer as readers, she then asked our mutual friend and featured artist Eric Ferguson to read as well.[xiv]  The effect of her collaboration with Papalia was truly worthy of a real stage (which we did not have).

The performance was a delight to see in the early evening sunlight.  The summer glow poured through the windows around our makeshift stage and warmed the audience’s faces.  It was the sort of “happening” atmosphere I had dreamed of for the show. I had hoped the performances and readings would be like a kind of chaste version of the 1960’s Andy Warhol “happenings” where film, theater and musical performances existed alongside social dialog and the presentation of art.  It was like drinking vintage Dom Pérignon out of a dusty paper cup.  It felt rebellious and surprisingly decadent.

I Want is a living document, changing and evolving each time it is presented.  Some lines which Papalia no longer feels the want for have been tossed to the compost bin and fresh “wants” have taken their place.  For instance the DISABLED sign has since become a realized work, so that line might be omitted from newer versions.  This makes each presentation and publication of this piece unique.  All of the performances and publications if thought of together would act as a collection, a sort of history of Papalia’s hunger and satiation.

In Chapter 1 we learned that the intellectual, mental, sensory and physical nature of each artist often dictates the ways they choose to approach their work in the studio as an aspect of their practice. We learned that though the impact of change to a body or mind can change the way one works, it does not mean it inherently influences the work they produce. But let us ask if there is perceivable disability in Papalia’s artistic practice in I Want. I must say here artistic practice should be considered separate from content.

Papalia often works with sighted photographers and vieographers to document his work or to facilitate the experiences of his social practice projects.  He takes notes via recordings and uses “Text to Speech” software to write. Do any of these methods influence his work?  Papalia does not readily speak about how his practice works because of blindness. He only states how it informs or inspires his project.   Consequently I can only point to what I have noted from the performance.  He did not read a braille script; rather, he memorized the one line he would speak and utilized assistance from collaborators in deepening the work.  His blindness is, I would think from this observation, connected to his willingness or attraction to have such collaboration.  Surely, if he preferred, there would be a way for him to present the work himself.

Let us think on the work of Chuck Close.  Close is face blind, a learning disability that makes one unable to recognize the differences between faces. Close paints faces and subsequently he learns those faces, and those faces he paints are usually people he knows.  One might be tempted to say that those deconstructed grided images he paints arise from Close’s learning impairment.

Similarly, the temptation is to say, cut and dry, that his blindness is why Carmen collaborates since his blindness to some degree requires such collaboration.  But this is a simplistic view. Papalia is a very social individual, so this must be considered as a driving influence.  I know this of him because we have become close friends and I have observed this in his career. He helped found a nonprofit that created a community around writing, a large undertaking which is not necessary in building a successful career in writing.  One would do such a thing to make a difference in their community and engage with it.  It is no wonder then that over the years his work has become increasingly participatory in all levels. He writes and he works to engage with other people in his creative process from building projects to the presentation of projects.  One has to take into account that even for the artist with the disability, the connection to disability in practice is hard to understand since it is impossible to unravel the process of creation into delineated parts. That is, apart from the creator’s life and personality, and map the connections.  Creativity is taking two or more disparate things and connecting them; but how such a connection arises in the first place, the influences where inspiration come from, is often mysterious even to the creator.  We also cannot assume it is only one thing. For instance my use of pink in my painting could be thought to connect to my association to my childhood bedroom and thus my subsequent disgust for it, but am I sure? No, it may just be a matter of taste and personality.

How does Papalia represent disability in this work?  Firstly, and most overtly, we observe his own blindness as a lived experience and in general his life. There are a few lines where there is no discernable connection to his disability like, “I want a kissing tutorial because I don’t think I’m doing it right […] I want to ride a media circuit” and “I want people that I don’t know to nominate me for an achievement award.”

Secondly, he notes multiple characteristics of social pressures around his disablement as putting him in a place of wanting.  His list includes social phenomena in many different aspects of his life; cultural, family, identity construction, economic, environmental, professional, sexual and other areas.

This piece seems to represent a social model of disablement, not the impairment as overtly.  Naturally what surfaces from this is the temptation for readers to say this work is a political type of representation since it does not seem to describe what the blindness is like but rather what it is like socially as a disability.  I do not agree that just because an oppressed class situation is depicted it makes for a political work.  But each time this characteristic appears it should be asked, Does this illustration of social disablement make this a political work?  I think a better way to phrase this question is, Is he persuading us, the audience? Because to me that is what makes something political. In this case, I believe the answer is “no.”

Papalia thumbs his nose at disability pride in defiance, but it is still hard to tell if he is serious.  He writes, “I want to replace the word ‘crip’ with the phrase ‘are you fucking kidding?’ whenever it’s used for empowerment” but at the same time he writes, “I want to re[-]appropriate the word ‘blind’ so it can be seen as something positive” and “I want to develop a cutsie word for my disability so I don’t have to say the word for my disability.” These latter two lines seem in conflict with the former. I know he really does think “crip poetry is a silly term”–there he is really serious.  I only know this because we have talked; not from the work. The crip statement is clearly not the most supportive endorsement of disability pride language.  I am sure this poem could leave a bad taste in some mouths. That is in the mouths of “crip” poets who might not want to have a sense of humor about it.  He also writes “I want to be able to make fun of people who are hearing impaired.”  That may not always be taken in the spirit I would say he means it to be – a playful spirit.

So clearly there is not any sense of organized political voice in I Want that allies with any sort of disability movement, nor is it effective as criticism of any such movement because it does not have a consistent view. This is therefore a representation of an individual’s experiences, not of what they would want to have change politically.  Ultimately, I Want is a self-indulgence and spectacle which in a blunt way states many social phenomena that Papalia responds to with his statement of desires.

Thirdly, he represents blindness in I Want by stating his personal feelings in what one might think of as in a vulnerable manner, through humor. When he writes, “I want to address the wrong person and for it to seem intentional, I believe he actually means this line as truth.  This sort of thing, I can attest from personal experience, happens embarrassingly often and with unpleasant outcomes.  Frankly it would be nice not to have the bother.  On the other hand, he writes “I want to be recognized as a hero.”

This work certainly has a few ambiguities arising from Paplia’s alternating use sincerity and sarcasm.  Generally, PWD are treated as though we must overcome our disability to achieve anything in life or when we achieve something it is in spite of our disabilities. The person with the disability is then seen as a hero and an inspiration. This is insulting to many as it moves focus from the achievement and it also feels awful since the attitude has a sense of pity built into it. For example it is like saying, “Oh a blind painter can make a career out of painting in spite of her disability, so I can!  She is a heroic inspiration to me.”  In reality, I am no hero for being blind in any way. Anyone who makes art is a hero since it is not the most popular of professions.  It brings very little prestige or monetary rewards. Being seen as a hero for being blind and completing an everyday feat is, bluntly, a backhanded compliment to many PWD.  This is not to say some do not feel that they are overcoming their disabilities and want to be recognized for it.  However, here Papalia is being sarcastic. There are a few lines like this last one that I think would need some explanation for those who have never had a lived experience of impairment and disablement via a social model. I believe this lends to this piece as a work of representation and not a political work because these ambiguities would not help in educating unless it came with a companion text. In that instance then I would think it may be considered a political work.

Where he writes, “I want a telescopic phallus that I can show off on the bus,” he refers to his cane: He wants a telescopic, meaning collapsible into itself, cane that he would like to think of as a sign of masculinity or virility.  As I stated earlier, the cane is an item that signals disability which possible able-bodied mates may see not as a part of my wonderful unique body but as a stop sign. I agree with Papalia. It would be nice to have it be a symbol of sexy. There are many other examples like this one. And these all form an intimate map of who he is in relation to his experiences as a blind person. It is derived from his body and this is detectible in the work. The performance of the work shows how this work intersects with the term I conceived: disability in the arts.

Patricia Krishnamurthy  Background Noise  Mixed media on paper  22”x 30”  2009

Patricia Krishnamurthy
Background Noise
Mixed media on paper
22”x 30”

Section 3: Disability as Grounds for Creative Production in Gallery Art: The Work of Patricia Krishnamurthy, Gwenn Seemel and Molly Garmire

a. Patricia Krishnamurthy Biography

After raising two children and pursuing her first career–teaching children with special needs—Patricia Krishnamurthy returned to college in 2007 to pursue a formal study of art.  She completed her Post Baccalaureate Certificate in Painting and Drawing at the Oregon College of Art and Craft (OCAC) in 2009.

Krishnamurthy writes that she “has a strong familial history of severe hearing loss.” She was diagnosed with a moderate sensory neural hearing loss during her years at OCAC. Krishnamurthy benefits from using hearing aid technology but the high ceilings and hard surfaces of most modern environments such as restaurants, art galleries, and art studios echo making it difficult for her to fully participate in social and professional activities as she had prior to her loss of hearing.  It should also be noted that while in school Krishnamurthy utilized all opportunities to find accommodations to work more fully with her collogues. Nevertheless she came across real insurmountable barriers, both build and social.  She found these barriers to be worthy of examination within the bounds of her artistic practice because Krishnamurthy’s practice is foremost about understanding.  So it was for her the intersection of art and disability in her personal life that led Mrs. Krishnamurthy to explore the visual representation of hearing loss through a series of paintings and mixed media works while in school and afterwards.

In addition to her body of work on hearing loss, Krishnamurthy has created an extensive body of work exploring the transitory nature of memory and life stories. In A Somewhat Secret Place her work Story Quilt II: Myth and Memory, Mixed Media on Tyvek 2009 was displayed alongside her work selected for discussion in this book, Background Noise, to emphasize her use of hand written text as both historical and personal. The Story Quilt series of work is inspired by her collection of heirloom crazy quilts as well as the life stories of family and friends. Krishnamurthy creates mixed media pieces that use pattern, text, and imagery to narrate a complex web of stories and relationships. Krishnamurthy’s current works are on a thick ground of gesso poured over wood panels which enables her to inscribe into and build up the surface of her paintings, creating the impression of time worn fabrics, old lettering (both type and hand written) and fading photographs.

Krishnamurthy shows primarily throughout Oregon and Washington. To name a few recent venues showing Pat’s works: Disjecta, Glenn and Viola Walters Center, OCAC’s Hoffman Gallery, RealVest Corporation, Sequoia Artist Cooperative, and Tazza Café.  Her professional affiliations include the Oregon Women’s Caucus for Art, the Geezer Gallery, and the Sequoia Artist Cooperative.

Biography written in collaboration with Patricia Krishnamurthy.

b. Patricia Krishnamurthy Lost in Translation: Background Noise

The exhibit had been open for a week when an intern from OPB, the charming Anna Geannopoulos, contacted me.  She specifically requested an interview with me.  She informed me that she intended to write an online article about my project and exhibition A Somewhat Secret Place.  The show, like this book, was a means to create a dialogue with the public about the place of disability in all forms of art.  As you would expect, each opportunity to speak with the press became crucial in generating attendance to achieve such an exchange of ideas.  With these aims in mind I agreed to the interview.

In addition to myself I arranged for one of our artists to be interviewed in an effort to shift our publicity’s focus away from my own artistic motivations.  This is why, on the day of the interview, I was joined by my dear friend and featured artist Pat Krishnamurthy.[xv]

Krishnamurthy arrived early and we sat waiting for about 20 minutes in the makeshift sitting area I had prepared.  I placed three white plastic folding chairs and a table in the center of the gallery reception area for the interview.  I am certain it made an unimpressive but kind gesture.

To kill time I shared my many concerns de jour regarding the show.  She was comforting and confident for me although I was uncertain. We both agreed uncertainty is a common every day feeling in an artist’s artistic practice and laughed about it.  I answered her many questions, some of which were about what I wanted to accomplish with her interview.  I tried my best to explain exactly why I had dragged her there on a sunny afternoon and why just me talking with the reporter would not “cut the mustard.” Already there seemed to be a little anxiety in the air.

As we spoke, Krishnamurthy remarked that she was surprised that I picked Background Noise to have her show and to now discus with our soon to arrive guest.  She walked past me over in the direction of her two works, pointed at the painting, and gave it an inspecting glance.  Then she promptly took a seat and said: “Well, when I brought this piece to critique in my class at OCAC the students had told me that it looked ‘too happy’ for what it was.” She then whipped her face back my way to read my lips.  To the evident bewilderment on my face, Krishnamurthy repositioned herself in her white plastic folding chair.

Shocked, I could only reply “really…so why?” she shrugged modestly, as usual.  She continued, “They said it was because of all the bright colors, and that such a choice did not make much sense, because the piece was about communicating loss.  I mean… I was trying to make a work with a visual representation of my new level of hearing loss and my new experience of social environments.”  I wondered if her intentions were present in the piece or rather if it could be said that her intention led to something else.  I strongly believed then that it led her to a playful and kind introspection about her impairment.  The finished work seems to me to be a sharing of not only a visual representation of the social model of disability, but how in representing that we often are celebrating our experiences for the benefit of ourselves and others.  None of what she said that day was trivial, but it was off handed and unexpected and it caused me to do a great deal of rethinking about representation and disability art.

Sitting there, a Mexican soda gripped tightly in my hands, I twisted in my seat to inspect an order of chips and salsa.  Like our sodas, she had generously brought them from the burrito place next door.  Since in reality our gallery wasn’t a real gallery, but only a pop up in an unfinished storefront without public facilities, we had made an arrangement with the restaurant’s owners for our staff and guests to use their lavatory.  I knew she went there to use their bathroom, and as the conscientious person she is, she just had to buy something.  I told her I was glad she had bought it and that she felt compelled to share.  I was doubly thankful for the food as it allowed me to buy some time to think of that “oh so brilliant” thing to say I felt that I ought to know inherently.  But I did not say anything.

Krishnamurthy had not let me refuse the soda when she first walked in.  Both it and she I deeply appreciated.  I sweated the whole way to work that day and remained glued to my desk only to dream of food or a restroom.  This was because of our lack of funding.  I was the only staff.  I commented on this too and thanked her.  Picking at the chips, I was thinking about what to say, recognizing I was sort of stalling and feeling the presence of a weight growing on my chest.  To tell the truth, I could not put my finger on why Pat’s peer critique struck me as wrong and somehow hurtful.  This is when the OPB reporter arrived and thankfully put an end to our conversation.

Over a year later, it dawned on me that her class just could not “get it” and that gave me a sort of sadness or detachment. I knew that it came from how they conceive of disability and that they could not mentally move past this. Krishnamurthy’s nervousness related to how her critique unfolded confused me and made me think that she may have felt dismissed along with the true utterance of the work.  I considered the possibility she did not fully respect or maybe have confidence in her piece.

This piece was the most clean-cut example of disability art I reviewed in all the applications. It shows disability as a place of artistic production; it shows a selection of traits to represent something about a disability; and, it is remarkably unpersuasive politically. But I will say that there is something to how the text is disarmed that speaks to a disability aesthetic.  Clearly there is some overlap. Yet her class and she seemed to be unsatisfied with the work, saying it looked happy, inferring it should look sad, being unwilling to accept an utterance in contradiction to a preconceive idea about disability as an acceptable outcome of the artistic process.

Let us take a minute to really examine the image she made in all of its parts and try to figure out what the piece is without any of Krishnamurthy’s story.  Background Noise is a medium format mixed media painting.  It is colorful and graphic, dominated by both a vibrant blue and a sense of flatness.

In the lower third, Krishnamurthy has composed twenty figures corralled around five round tables with cups and a bowl set upon some of them.  Thirteen of the figures are standing and seven are seated.   The technique she employs in constructing the tables and figures is an element of drawing called contour line drawing which is drawn with a consistently weighted pen stroke in an ultra marine blue color.  It is reminiscent of the color of a cheap plastic blue ink pen.  Like one which you may have signed your receipt with this weekend at the gas station or the grocery store.  She achieved this line with a refillable, fine felt-tipped pen filled with a semi-waterproof ink on top of erased pencil marks. The graphite marks are not very visible.  I’m told that indents can be observed on meticulous inspection.

Krishnamurthy’s use of contour lines is very important in Background Noise since due to its nature it makes drawings that seem flat.  Contour lines describe only the edges of three-dimensional objects, creating life-like shapes.  But these lines don’t describe the underlying structure of the forms.  The sort of contour line she uses is not as fully descriptive as it is poetic.  It is noticeable that the lines are sort of rounded and smoothed.  This is as if these rather consistently weighted lines opted to leave a few ridges out – here on a neckline, and there at the hairline – in favor of a smoother, faster-paced line stroke.  That is to say, contour line drawing can make shapes but cannot describe the way the forms fit together to make compound forms that seem round in space.  Adding to this is the way in which she has recorded the contours of objects as a sparse summary or generalization of the edges and not a thorough description.  Although, with this element of drawing, the sense of roundness can be implied through the element of foreshortening and changes in scale.  Krishnamurthy does this with the ovals of the tabletops and limbs of the figures.  There are places where contour lines indicate forms receding into space through a foreshortening of the contoured shape. Krishnamurthy uses overlap of shapes and scale of forms to indicate a mature idea of “real” space.

Cross contour lines can help to describe how forms connect and the structure of three-dimensional objects by marking or that is recording a noticing, one could say, of the internal edges of shapes within larger compound shapes.  These lines do not inherently lend to a sense of three-dimensionality and as an element of drawing are always referential to a contour or edge of a shape or of a form.  That is to say, at least not in the same sense that the element of tonal value could record forms in the round.  For instance, painting of passages of light and dark can show how light hits an object in the round, giving rise to opportunities to indicate structure and even the quality of the surface–meaning the texture–inferring to the observers ideas of touch-ability or the illusion of grasp-ability.

Detail: Background Noise

Detail: Background Noise

There is no discernible texture in this image, but for a fog that in some places is used to knock a form back from another, unifying it into an initial figure as in the case of the far back center male figure. Also the atmospheric blue that dominates the piece surrounds the outer edges of the group of figures and tables and gets darker and more concentrated as it meets the edge of the grouping. This allows the quite bright color to fall back behind the figures and furniture. From a distance this makes the group seem like a non-descript shape with upright knobby features. Maybe at a distance it sort of looks like a chessboard with all white pieces. But the point is that it unifies and creates space while washing out the detail by having dominance over the details. Krishnamurthy’s intermittent use of cross contour lines in the drawing makes it feel complete. There is no one area lacking in interest. One could say it seems finished, but that the forms seem unrealized as believable people and tables in the round.  That is, we get the impression of a scene with figures and tables. There are several places throughout this lower part of the composition. Krishnamurthy used cross contour. The hands of some figures, the cup lips, the folds of clothing and the edges of clothing have this intermittent use of cross contour lines.

In the upper two thirds of the image, the predominate feature is a clustered mass of richly colored overlapping speech balloons which seem to float up from the people. There are a few in a smaller cluster in the left hand corner, barely above the cafe scene. These are the kind seen in comic books that would include text. The text written here is quite different from the sort of text one might see in Superman comics. This text is less graphic than that; only faintly visible from a distance.  The letterforms are those of everyday printed handwriting.  The letters are not fat, uniform in stroke and serif, nor are they slightly italicized like a handwritten or mimicked font face. Rather it is a sort of gossamer.  The printed letter-forms are written by hand and lapse into an ethic of cursive, flowing gracefully and swiftly.  The letters are unceremoniously treated with wet media.  In some areas, a brush blurred and bled the neat flow of letters to reveal layers of letters written slightly shifted but in about the same location. A washed away layer reveals the history of the painting. We observe for instance two Ts faintly and just to the side of two shapely drawn Ts. This revealing of the layers creates a sort of depth, but a shallow depth of field.  As if the she drew a world that only inhabits a foot-deep space.

The speech balloons are in a rainbow of colors: a fleshy salmon, pink, grassy-greens, orange-ish rusty earth reds, blue-ish reds, eggplant purples, cloudy indigo blues, acidic green-ish yellows, and a few are painted with a cloudy blue-ish white. All of these forms are delineated by their strong color contrast against the blue background and that they are outlined with a blue lost and found line tracing many of their edges. This lost and found line use further implies a sense of flatness of the graphic shapes and creates a relationship to both the text and to the lower third of the composition with the scene of the tables and figures. The background is an atmospheric cloud of blue that sings melodically against the pop of the, as we painters would say, “tube colors,” of the brightly colored balloons.

Across the upper half and along the length of the image, another text element creates a sort of veil. I would describe this element as resembling a toppled free-flowing tower of hand written poetry stanzas.  These stanzas are a lyrical, alphabetical list of onomonopias. They reads sideways, bottom to top.  You have to tilt your head to read and in doing so read rather uncomfortably.

Though the piece is painted, the presence of hand writing and the line-like nature of most of the piece make me want to call it a drawing. However, since we see a working back and forth in the speech balloons using opaque paint, I will call it a painting. But I think on it here in loose terms since it seems to be both.  Some in the art world dislike this distinction, holding it as decidedly it as a matter of taste. I think that it is not a matter of taste. I think the viscosity of paint and what it does is unique to the medium and when it is used to do what transparent media does, it is nice to have the distinction as it makes it clearer that there is a creative use of the paint or drawing media. For example, the phrase “that drawing seems painterly” should mean that the media was used like paint. In this work, the painting seems like she has drawn in places where paint was used.

The speech balloons are difficult for me to see even in person with my nose pressed to the glass.  I have used my computer’s image editing software to enlarge, orient, and adjust the contrast so as to transcribe and read the writing throughout the piece.

I have transcribed the text as carefully as I can. As a disclaimer, surely there are discrepancies between what Krishnamurthy wrote and what I have recorded in the pages of this book.  However, I suspect that this might be the point of the piece.  I don’t think Krishnamurthy ever had the intention that I would enlarge the image and heighten the levels of contract and hue saturation just to read and transcribe, or that anyone would ever want to read ever single obscured word.  I did this firstly so that I could better understand the work through her choice of words, and secondly because on reproduction I realized that the nuances of the piece could be lost or inaccessible for some of my readers. So, here is, as accurately as I can record, reading from left to right, the clouds of speech balloons:

1. A small-ish orange balloon on the left-most side of the composition:

do you mind

telling me what is

so terribly [fades out]


2. An even smaller red speech balloon lower in the composition bears blotted, bleeding text, seemingly in part washed away and covered with media. It reads:


It’s a secret

3. Above and immediately to the right, a green speech balloon is positioned in approximately the center of the composition.  It’s notable that this speech balloon was the most recognizable for me as having text upon my first and second glances and, well, even for a while in my observations of this piece.  Upon close inspection we see that the text has been written several times under washes of green and rewritten for clarity. This method lends to the notion that the text seems to cut through the flat balloon and fall off its edges into an ultramarine blue that is reminiscent of an indigo ink stain. The speech balloon reads:

It is the first edition of the

book of Descartes’s philosophies

essays and published in 1636 in whi

his famous “discuses on the

he had originally appeared

and once my most

tresieved possesse”

4. Then we move below and to the right. There a small, pale, true-red speech balloon so very faintly reads:

“who told her

But she”

An observer must perceive the words by mentally filling in the missing or unrecognizable letters of the speech balloons; the text in the speech balloons is interrupted by the flowing text that veils the painting. There is a kind of visual irony to this image.  The sideways list seems to all at once knit the center of the picture plane together while it simultaneously impedes our reading of the speech balloons. As one struggles with the puzzle it becomes clear that the text in each balloon is not complete.  The text slides off the rounded shapes, beyond the boundaries into the smoky atmosphere to blow away beyond our ability to find a tangible meaning within the phrases.  As text is demanding, we are encouraged to keep trying to solve the puzzle.

The veil of sideways text covering the middle of the image is like a tree line one looks through to make out the sight of another scene. It is through those forms that the viewer is to read text in the speech balloons.  The sideways text sort of solidifies the painting. This text veil ties her use of contour lines on the figures to the graphic shapes of the balloons that are quite differently treated. The balloons are delicately and evenly painted flat with even shading and sometimes modeled around their edges creating the lines and a small amount of depth between each balloon.

The list reads

ask ahh argh art buzz bang bong barf

blab blare boo hoo bow baa bang beep belch

boom bring bubble burp boom bellow bleet bell

bay crash click crackle cluck creak chatter

chirp choo choo click cu

chomp chew chortle

chuckle clang clop

clash clutter

click cry

clip clop clunk cough caterwaul

cock-a-doodeloo crackle coo chant

creak crook crunch caaw crash clitter crick crinkle

crunch communicate connect contact ding-dong dripdrizzle drone

dook ear eek fizz fizzle froosch flatter fink flap flicker grr

growl gibber grumble gripe giggle grunt

gurgle gasp glug groan grunt guffaw hahaha

humhum bonk hoot hiss howl hoh

hoot hutt hiss hoo haw hoot hoot

ho-hum huh honk hiss howl ho ho ho

jink jro just jigle jangle jerk

kenplunk kerching knck knock murmar munch mamble

miaooo moan mmm mutter mew

ouch ooze ort

purr ping pong pow

pup pitterpatter  plop plink [(but could be blink) ping

plink parp pipe peep quit quack

question roor king rattle rip rustle ribbit rev

recite ratatattot ring rihe [large spacing then it continues] sss slurp swisp

squeak sing sniffle shhh snore scream

shhh sniff squeal sceech sniff shush

slap scratch smach snap snore

snap snort snoffle splash

splat splatter splash

splutter squak




scritch scrunch shush

swish szhoom tap thudthwack tinkle tap thud t tick-tock tap

twand twitttter tweet trumpt talk thud thwack tone

trickle tsk-tsk twang tinkle toot tick tock

utter twizzle tick-tock twitter thwod  whirr whap whirr whiz

whinney warb;e wisper wrorr whiz

whoosh whallop

whisp [eclipsed by a word balloon could be an e] whistle

whack whap wheezes whine

which whomp whoosh wop wiffle

warble whoof whoo wish who who

woof yip yelp yawn yelp yowl

zing zap zizz

zoom arf ask

ahh argh avf



boing bark barff blab blare

boo-hoo bow-wow

baa bang

beep beep

bell boo blare bulbble burp boom bellow bleet

baa bark barf click crackle cluck creak chatt

chirp choo-choo chuckle click  cuckoo cackle cheep chew chortle

chuckle click clash clatter click cry coow croak

click cry chew clink caterwaul cough chatter

creak croak caaus crackle coo chomp crunch

chant crunch

contact ding-dong clzzt


dook ear eek

fizz fizzle fwoosh flip

flap flutter fink flicker grr

growl gibber grumble giggle gag

grunt gobble gugle gasp glug groon grunt

guffaw ha ha hum-hum honk hoot hiss howl ha ha ha huff hee haw hunc inquire ish

jingle jangle jest

Patricia Krishnamurthy in home studio 2011

Patricia Krishnamurthy in home studio 2011

Why did Krishnamurthy’s classmates find a contradiction between the “happy,” or I would say radiant or vivid, colors, of the speech balloons and what they perceived was a sad topic?  Let’s start with an obvious assumption about their attitude toward the acquisition of hearing loss.  We Will assume that for them the topic of the piece–hearing impairment and social situations–meant that the content must be sad, even devastating, because the loss of hearing must be completely isolating and thus sad.  Then let’s ask how would her classmates believe it is sad or how did they learn this attitude, being that none of them had any hearing loss?  Is it learned from stereotypes or is it something our parents teach us or is it in our laws?  I suspect that our cultural attitudes toward the ideas of disability come from all the above.

I would like to take a tangent here to go deeper into the constructions of our cultural attitudes about disability. It is in our daily lives but often unnoticed. It is subsequently insidiously pervasive–wholly unnoticed by the majority–so it is a social problem. This makes it inherently a problem of the fine art world, a world born from human experience both individual and cultural.  After this I would like to revisit the written elements in Background Noise and how if we can go past all this negativity we can find a more competent reading of the work.

Joseph Grigely highlights such attitudes by way of, “a barometer of linguistic permissiveness” in his work Blindness and Deafness as Metaphors: An Anthological Essay.[xvi] He lists relentlessly 52 metaphors used in writings, mainly along the lines of documents like letters to the editor from everyday publications such as the New York Times. What is notable about this collection of metaphors that use blindness and deafness is the presence of metaphors which use mental and physical disability and impairment. Hooray, four kinds of metaphoric put downs for the price of two!  For example he recorded on the last page of his essay:

I think that one of the saddest aspects of our time is the total destruction in people’s awareness of all that goes with a conscious sense of the beautiful. Modern mass culture, aimed at the ‘consumer’, the civilisation of prosthetics, is crippling people’s souls, setting up barriers between man and the crucial questions of his existence, his consciousness of himself as a spiritual being. But the artist cannot be deaf to the call of truth; it alone defines his creative will and organizes it, thus enabling him to pass on his faith to others. An artist who has no faith is like a painter who was born blind.[xvii]

It is that by design such metaphors enforce stereotypes of disability as disgusting, inhuman, inferior, isolating, lazy, stupid, sick and ugly. But the paradox here is that we are so accustomed to these ideas being used in this way  that we cannot often recognize the damage they cause.  I do not mean to shame society for this.  It is difficult to understand, but it is something that is really effective in subjugating disability as inferiority.

I from time to time need an explanation to understand why something is discrimination. Let me illustrate the use of each word having to do with a disability or impairment, as I perceive the meaning as used in the above metaphor and not unto themselves.  I invite you to actively participate and develop your own list either written or in your mind.

1. Prosthetics here means in context a civilization of “fake” bodies or pursuits.  This metaphoric statement does not account for the adaptive aids that PDW use. The prosthetic or adaptive aid becomes a real extension of the disabled/impaired body.  The short of that is that my white cane is a personal and real extension of my fingertips to sense the world around me and is both a beautiful and useful part of my bodily experience of the world.  Therefore the meaning of this metaphor brings shame to the disabled body.  In this context it becomes an antonym to beauty.  It also links it with a sense of frivolity by linking it to consumer culture.

2. Crippling here means to make one’s soul immobile or helpless. What does this say of, for instance, wheelchair users? Are they truly immobile, altogether unable to be in the world to function as people? This is not rooted in truth. This metaphor employs a stereotype about disabled persons.  We live in a world where there are two types of “Crip Poetry” one of gangsters and the other a project of PWD who seek through their craft a re-claiming of the word cripple as a point of pride.  (Find in Chapter 4 the spoken word poem Candyland by Nathan Say.)

3. Deaf here means ignorant or stupid and therefore unwilling to make real, meaningful change for culture.  This does not make much sense does it?  If you were unaware of something why would you be refusing a command?

4. This is not a metaphor, but rather a simile.  He wrote “An artist who has no faith is like a painter born blind,” which is to say that a person who is blind who paints is inherently unable to produce beautiful objects or functional art objects, and he leans on irony from a stereotypical concept of blind people and blindness. I would like to say to Tarkovsky “I have a hard time intellectually responding to this since I am a blind painter, I am a painter born blind, and I did not know this was tragic like not having faith.”  First of all, irony most times gets us no where and fast, but I do not mind when irony forces us to ask questions.  It clearly does not help us ask any questions here. Could it be that Tarkovsky means “real” blind people, not visually impaired people, because many sighted people believe visually impaired people see “too much” to be considered blind?  Well please pardon the pun, but that’s not a fun corner to be painted into. What he may be unintentionally doing is giving identity assignment to PWD without regard for our personal and cultural identities we construct.  It is presumptuous and dismissive of our autonomy and culture.

Clearly Tarkovsky’s intention is not to talk about disability, but rather beauty.  In the process he happened to make remarks that I would hope are in ignorance. I cannot think that anyone would consider it discrimination and not say anything to criticize him.  To date I have not found a further going analysis saying as much online. This of course does not mean it does not exist somewhere in the world.  Although it does mean it is not commonplace.

This is damaging because it tells PWD (and speaking to our question at hand, it primes the art world public) there is only one way to conceive of disability which is as inferiority–not as what it is: variety of form and mind.  As most people “meet” a work of disability art they take this understanding with them.  I think this greatly contributed to how Krishnamurthy understood the critique of her work and subsequently how it did not help her explore that work.

How can the arts counteract this problem? It is a two-step proposition. Firstly we must recognize the issues at hand, asking why these problems persist, then foster what we will call a creative imagining.  Secondly we counteract this problem by creating fellowship between PWD in the arts and people without disabilities in the arts.  As I stated in Chapter 1, there is some distrust that artists with disabilities have against the art world.  This also requires that those working outside the fine arts in disability culture arts participate in this dialog, no matter the level of distrust.

For our first step we have to figure out how to identify the problem and move people to action. This is really hard, as many do not see the negative use of disability as damaging.  So it is that society views its behavior in these matters of discrimination like parents of overweight children.  In a 2000-2001 study, an alarming number of parents (50%) were reported to think of their overweight children as normal weight, and therefore were unwilling to consciously consider the real medical dangers to the future health of their children, when in fact there are many.[xviii] The study did not go into why this was.  One can speculate that perhaps the parents would have to ask themselves, if it might be their fault in some part. No one wants to think of his or her actions or inactions as harmful. This makes people feel that they are wrong. It fills them with shame, and the feeling that they might be bad people.

But there is a solution to shape a more productive emotion as Brené Brown points out in her TED talk (one of several she has given for the online series of public lectures where experts share innovative ideas).  She says guilt, unlike shame, is what we hold up to what we want to be.[xix]  Brown says that when the two disagree, we know what it is that we want to do or become.  Shame is ‘you are bad;’ guilt is ‘that behavior is bad.’  Shame does not move people; guilt may not feel good but it moves people to action.

So in this case I propose to openly acknowledge the issue, assess the damage and work for a healthier society – be it children that are at health risk or covert issues of discrimination. This “barometer of linguistic permissiveness” shows us an image of something I do not think we want to be. It is now that we can explore our own gilt and choose how to construct the way we talk about works of disability art. The issue is the assumption that is commonly held that disability means as a bodily experience something bad. So I suggest when the work conflicts with this, we not fight it.  Rather we should be open to understanding it.

How did we get here anyway? And how do we get out of it all together?  It is by having a creative imagining.  Disability is in a long line of shameful discrimination that we as a society have had to confront.  It is no different than racism and sexism, which historically were not taken seriously as discrimination for a long, long time. But we changed our minds.  Often it is PWD, become the object of disgust and ridicule.  Although we would like to think that our society is consciously aware of this, it is not: it hides, tucked away from society at large.  The first step to a creative imagining is recognizing our disgust.  We have to understand that the idea of human disqualification is directly linked to disgust as Martha Nussbaum writes in Disgust to Humanity:

The politics of disgust is profoundly at odds with the abstract idea of a society based on the equality of all citizens, in which all have a right to the equal protection of the laws.  It says that the mere fact that you happen to make me want to vomit is reason enough for me to treat you as a social pariah, denying you some of your most basic entitlements as a citizen.”[xx]

Nussbaum shows how through the very creation of the 14th Amendment of the US Constitution and in the rulings of the Supreme Court the United States has created a legal system that now recognizes there must be equal protections for all people.  But that such a system must included special protections for classes of people, which need more protection than others, because of the very animus that arises from (as she asserts) learned disgust. She concludes that without such legislative and judicial intervention such discrimination would persist based on negative attitudes of a majority.

However, I will put in my two cents in here.  I did not for a long time recognize how such comments eroded my confidence in art school, often keeping me from declaring my Blind identity, so as not to have to deal with discrimination and an endless litany of questions. This sort of language has no business in the art classroom since it continually alienates students with disabilities. It tells students that have any sort of disability or impairment that they are inferior.  This message is delivered subtly but is nevertheless harmful, at least in my experience.  The student artist needs confidence but this is hard to find when hate speech is not recognized as hate speech.

Nussbaum describes creative imagining as the cure to the allocation of disgust on minority groups. She thinks that in thinking on what other people want and need, we can achieve eradicating discrimination based on disgust.  This imagining is not only about issues of access. Really, it is about empathizing–realizing that we all need love and acceptance to grow.  I do not have in mind how this could be applied to the art world system.  This book attempts to educate in some small way that there is a problem for disability arts as the ideal observer has not been built yet. On the other hand, political works, which I am heuristically calling disability pride art, may be a gateway as they teach about disability and impairment.  I think the only hope for this sort of art is a creative imagining in combination with more people with disabilities being represented in the fine arts.

Within a world that has few ideal observers for such work, what are makers of such representations to do?  In the face of all of this discrimination, I can safely say that a system of support and collaboration among PDW is crucial to make stronger works, as the atmosphere of critique is only one aspect to this problem. Access is also a problem and the lack of theoretical exploration into disability in the arts, disability art, disability aesthetics and disability pride art.

I first met Krishnamurthy when she contacted me to request help in forming her application.  I was to simply help her with learning the application, but something bigger happened.  We met in person, as email is time consuming for me with my impairments, and at that time the phone was too inaccessible for her or just unconformable.  The conversation turned in to resource sharing about all my art and disability research. I was shocked to find that even though her work was consumed with disability as its topic, she never learned prior to our meeting of terms like disability pride art or ever asked what her Background Noise would be called if one attempted to categorize it.  I wonder if her teachers just did not have a point of reference or whether perhaps the issue made them uncomfortable.

Over the years, we have come to support each other’s work and struggle with gaining access to the art world which stubbornly remains inaccessible and segregated. The many bouts of weeping we have shared in moments of vulnerability have helped me to have the strength to help all of us peel back the layers of shame to examine our guilt. All in the hope for an art world which could say to her “you seem to have found something playful within your disability, or at least that is evidenced by this work.”

If I have given the impression that I am without shame here, I do not mean to. I have learned that when I started this project I held much prejudice toward people with mental illness. This is even though I had myself had bouts of depression and I knew people identifying as disabled via mental illness. I first openly said I held prejudice. Then, for the first time, I asked my friends about their life experience and how it related to art.  I suspect that this has influenced me in many ways. This has changed the way I conceive of depictions of menial illness by people with and without disabilities. I had a creative imagining and created fellowship. It required facing the ugly parts in me and listening to others.

When I think of our first meeting, the words of the prominent second wave feminist activist and designer of the women’s movement fist symbol, Robin Morgan come to mind.

She said,

“these first small groups began to compare notes,

and whenever an oppressed people compare notes,

it’s just bloody dynamite,

[it is those] you know, you, too? Moments.” [xxi]

I remembered how touching and confessional our first meeting was. I emailed her early in 2013 asking her what she said at our first meeting about her impairment and she wrote me back:

Yes, I remember. I feel that, in losing my hearing later in life, I am in a sense, losing more than my hearing.  I am losing my ability to participate with the hearing world in the way that I have known all my life.  I have often wanted to talk with someone who was born Deaf to know how they feel, never having had the ability to hear.  I suspect that people who were born Deaf are not approaching their lives from a sense of loss. When someone is born Deaf, they belong to a culture, deaf culture, in which they can fully participate. As I am slowly losing my ability to fully participate in the hearing world.

So in short, our relationship has deepened and I have learned to seek out relationships with other artists and writers with disabilities.  I have also taken on mentoring people with and without disabilities who are studying themes of disability and impairment in the arts so that I can both be a resource for them and learn from them.  We all have something to offer in this conversation and we all have the same stake in it.  What’s at stake is fuller representation in the arts of what it is to be human. This is what we creators intentionally or unintentionally strive for.  Thus, in diversifying my colleagues I create a diverse artistic salon that is able to truly contribute to an area in fine art dialog where little exploration has been done.

I would like to now return to the work and the use of text. I had one of these collaborative conversations with Krishnamurthy recently online I would like to share at length her response to my questions about her use of text in her works as a sort of artist statement. I feel it shows some of the progression and introspection she has had to do in relation to her body and her work. She writes:

I find comfort in the printed word, in the shapes and forms of letters and in the meaning they convey. The printed word has a sense of permanence that the spoken word lacks.  Unlike the spoken word, the printed word is clear and exact.  Even if the writer’s intent is not immediately apparent, I can revisit the words, each time finding greater clarity and meaning. When I see someone’s words written out, I have the sense that they took some time to think about what they wanted to say, knowing that their words might last a long time.  Speech, by comparison, feels less certain; I can never quite trust what I hear and that sense of doubt undermines my confidence in the spoken word.

Text started appearing in my art around the time that I was initially diagnosed with a hearing loss.  Including text in my art was not a conscious choice at first; I think it was an unconscious attempt to communicate my ideas visually.  Having verbal conversations about my art was becoming more difficult.  Art classes, studios, galleries, and coffee shops with their concrete floors and high ceilings, became difficult environments in which to converse.  At times, I felt like my fellow art students and art colleagues were avoiding conversations with me because trying to make me understand was too arduous and required such repetition and patience.

What began as an unconscious attempt at communication has, over time, become more intentional.  All art is a form of communication and we all seek to communicate our thoughts, feelings, opinions and ideas to others.  For me, using text in my art became a way of having a visual conversation. It has started to replace the spoken conversations that I wasn’t having. The text I use in my art has become my own form of artistic “close captioning”.

What is most notable of the list that veils the painting’s length, is it leads one to view the meaning of the work as a personal meditation made to communicate, not strictly an experience of disablement via the social model, but rather it represents that meditation.  I say this for the reason that it is not phonetically alphabetized.  If this had been a true representation of low levels of audio perception then “Knock” would have been in the N part of the list.  There is a free and playful nature to it.  This does not speak to a sense of anguish.  Although there are words that are commonly associated with annoyance, like buzz, and actions that seem rude, like bellow. Bellow as a verb not a sound also shows as meditation, not a demonstration of how it feels to have hearing loss.

Clearly then this piece is not strictly a visual representation from the point of view of Krishnamurthy’s ears; if so certain elements would need to be extracted.  What does it say to make a playful veil over text a viewer feels called to read as text tends to demand of those with sight to read it (even if they are like me and know it is almost impossible)? It says: social situations are interesting, the way words float away is interesting, that even while there is a change in the way I the artist interacts in my social environment, I still enjoy the puzzle of social enjoyment, and I want you to see me figure out what that means in a small way. The world seems flatter, but it is still there in all its vibrancy. I cannot overcome the amount I hear but there is an acceptance here.

Gwenn Seemel Sympathetic Magic (Be A Good Role Model) Acrylic on canvas 17 x 13 inches 2010

Gwenn Seemel
Sympathetic Magic (Be A Good Role Model)
Acrylic on canvas
17 x 13 inches

c. Gwenn Seemel: Disability in the Arts or Disability Art

As I previously explained in chapter 1, Seemel’s practice is unaffected by her chronic illness.  She included in her application packet a work that was inspired by her chronic illness but fails to make a perceptible utterance of it in the work, which she has recognized and publicized.  This is worthy of some deliberation as it shows that intention to make work inspired by and depicting disability, impairment or chronic illness does not mean that a work is inherently a work of disability art.

One might ask, Is the work in question unsuccessful as a work of fine art since the intention of the artist failed to be realized?   Not completely; sometimes the artistic process “tells” the artist something contrary to what the artist set out to make or explore.  The artist must acknowledge this for the artistic practice thrives off such exploration.  It is what they do with that knowledge in presenting the work that matters.  In this way, sometimes art is like a science experiment where the resulting data disproves a hypothesis.  Occasionally the result, if understood by the artist, gives rise to a new understanding.  So yes, this work can still be considered a work of fine art even though the end product conflicts with the artist’s original intentions or point of inspiration–stubbornly representing something different–it only requires a shift in thinking.

Sympathetic Magic (Be A Good Role Model) is a small self-portrait.  When I hung the gallery I placed it on a post that was in the approximate center of the gallery, adjacent to the works of Krishnamurthy and Seemel’s First American (discussed in Chapter 1).  The concrete support was no more than two feet wide.  The post gave the small painting a sort of focus by displaying it apart from other works.

As with the first Seemel painting we explored (which was round), she has again played with the composition of a portrait.  The canvas is a standard rectangle, but what she has done with the composition this time is a little out of the ordinary.

I think one generally expects a portrait to be more sedate than anything else.  Perhaps a typical portrait would contain a person seated or standing, with a respectable amount of canvas surrounding the subject of the painting.  And did I mention the subject is usually sedate?  At least this is the generic idea I have about a generic portrait.  As far as background, furnishing and objects, one can expect that there may be a few items included as allegorical elements or as literal indicators of who the subject is.  Sometimes there is nothing besides the subject’s likeness and sometimes the subject seems to float or dissolve into an atmospheric background.

This portrait is a little different from what one would expect, which is consistent her other depictions of portraiture subjects.  Seemel’s composition is surprising for a portrait as it has confronted and interrupted edges.  This means that the forms, lines and shapes in the work hit or go out of the picture altogether.  At the top, the crown of the head touches the top edge of the canvas. To our left, her right elbow is out of the picture plane. Her left palm touches the right edge as if to push the edge.  She has cropped the image at her décolletage directly above her chest.  Her arms are raised to her ears and her hands are gently curled with the palms facing out.  It is as if the subject is reaching to stretch her back.  She has a carefree smile – lips parted slightly and her head is tilted to her right.  Her eyes are glinted with a blob of blue in each and are slightly in shadow and her brow seems raised slightly.   She wears a green tank top that is painted in several veils of green color pushing up in a U shape from the bottom edge. There is a small ashy-purple triangle in the lower left-hand corner under her underarm–a risky move as it highlights the two edges of the canvas–artists often avoid this since it can sometimes be rather distracting.  Corner triangles of any sort tend to carry the path of observation out of the picture plane.  However this shape relates to both of the negative spaces between her arms and head on either side.

She employs her characteristic style. She uses contour lines, dots, flourishes of dashes and squiggles and large passages of opaque and semi opaque paint in vibrant colors.  The patterns are painted thinly, delineating shapes.  These elements are layered, making a framework. The effect of this creates a likeness of the subject and a painting which resembles a brightly multi-colored jellyfish where one can detect the many structures of patterned passages underneath the surface likeness.

As usual her color is exuberant and kinetic. Dominating the perimeter of the painting are acidic yellows, aqua blues, crispy cyan, emerald greens and warm sunny yellows. In the background, layers of ultra marine blue, true purples and greens layer to push the ambiguous background back. In the most forefront, layers of patterning warmer colors such as reds in: blush reds, earth red, orange red, true red, and pinks are placed central in the composition, moving out from the center in a cruciform path of color.

Smudgy shapes of transparent fleshy peaches and earthy-oranges are used to delineate the forms of the face, neck and arms.  These passages give a sense of her actual skin color (fair) without traditionally rendering the skin by modeling colors and glazing them to make naturalistic looking skin. In other words, her method is not conventional and is fairly abstracted with many instances of imagined color.   She has similarly treated her hair, which is rendered with a few smudgy passages of the warmer light peach in the foreground; there is also a mustard yellow passage noting the side of her hair turning in space going around the head, which strongly lends to a sense that she is blond. Her hair seems to be drawn in a sort of side-parted, long, banged bob or long hair pulled back and pinned up. It is an acceptable ambiguity within a hail of long thin dashes of color that layer to give the impression of hair.  The hair appears blond even though there are lines of earth red, true fuchsia and a lot of green used to depict it.

The first part of the title, Sympathetic Magic, was a term Seemel had in mind from the start of her process.  She describes the term “sympathetic magic” as a supernatural or spiritual domain over a being through creating a representation of that being.  She would be the first to point out this is not a concept that she believes in, but rather how she conceptualizes portraiture in general, I would say poetically.  Seemel thinks of portraiture as having a value unlike photography (which she finds ubiquitous), and perhaps reproductions of any kind for that matter.  She finds that a portrait is inherently a special object steeped in time.  Not just the time of the observer, but as she says, “the time an artist obsessed over the shape of a ear.” She attempts to imbue a portrait with traits of the subject she depicts; in this case, with her own traits.

Intertwined in the wefts of painted dabs, drops and strokes, there is a hidden bit of text.  With all of the lines and dashes, transparent and opaque, it is hard to see that upside-down on the left palm (her right) is written the second part of the title “Be A Good Role Model.” One has to give keen attention and more time to notice this.  On Seemel’s blog she writes “Painting myself also tends to give rise to details like this one where I’ve written on my hand.”[xxii]

Seemel set out to make a painting that would connect herself in 2010, having a chronic illness (endometriosis) that made her feel and look sick, to her healthy body from 2005.  So she set out on what I call “a painter’s problem,” which for her was how to combine an image from a time when she felt well with her appearance at the time of the portrait.  She writes:

As I worked, the painting resolutely remained a depiction of me pre-symptoms.  At first, I was disappointed, but as I brought the piece to completion I realized that I was being silly.  I was idealizing a time in my life when I wasn’t sick but also when I wasn’t necessarily any happier than I am now.  Creating the painting helped me to see that while endometriosis has changed my life in a big way it hasn’t actually killed anything important about who I am.

Seemel says on her blog that portrait painting in one regard is for one person: the subject (the artist in this case).  She says she creates each portrait as a “place to go back to be refreshed.”  As both the subject and the artist, she learned a great deal about what a portrait can and cannot do, at least within the painting problem she set out to explore. She has written and video-blogged about this little painting in detail, so in relation to her practice this work sets before her followers (i.e. her patrons) some illumination on how she thinks of portrait painting.

But what does it do for us without the story? That is when we, for instance, meet the work in the gallery with only the gallery label for help.  Although Sympathetic Magic (Be A Good Role Model) withholds its personal utterance from us without the benefit of some back-story, we are still left with a wonderful example of contemporary portraiture. If one were to know the artist’s appearance and think on it as far as the self-portrait of an artist goes, this is a remarkably rare sort. It is of a smiling artist, stretched out and confident.  Most self-portraits tend to have rather intense looking faces, usually a bit pinched, even grumpy or surprised.

One might ask, since the artist uses her illness here for inspiration to make a work, but that it is not detectible, if this might be an aspect of Seemel’s work that could be discussed as “disability in the arts.”  I would think yes.  However, as we learned from the work in Chapter 1, it may be of small consequence in relationship to the whole body of Seemel’s work that is notably prolific for her age, but rarely seeks to and depicts disability.  However, as I came to conclude this chapter I had a small exchange with her on Facebook. I sent her a message to check in since she had been blogging more about (as she likes to call it) “endo since the show.”  She wrote: “I have incorporated my illness into my sense of self and therefore into my work more and in an ever-evolving way. Certainly, my last show originated completely in my struggles, and it was an attempt at relating those struggles to the struggles other people have.”  So one can assume that this may grow to be a part of her work or simply a period in her work.  Only time will tell.

Ellen's Hand Study (1-6) Molly Garmire Photography. 20”x24” 2010

Ellen’s Hand Study (1-6)
Molly Garmire

d.  Molly Garmire Biography

Molly Garmire was born in 1982 and raised outside of Portland, Oregon. Her family has had a major influence in her life and work. She is the youngest of five children and became an aunt by the age of nine. Her mother, a nurse, often did respite care for families and foster homes of children with extraordinary medical needs.  Because of her mother’s occupation, Garmire grew up around children and adults with different kinds of disabilities and impairments. She writes that, as a young girl, she “often identified with these individuals easier than the outside world.”  When Garmire was 13, her mother cared for Ellen, a child with Panhypopituitism (a hormonal condition resulting in a myriad of impairments which may include intellectual, mobility and sensorial impairments). When Ellen’s family was looking to place her in a foster home, Garmire begged her mother to become a foster parent and care for Ellen full time. Throughout Garmire’s adolescence, her mother would care for other girls with varying disabilities.

When Garmire’s interest in photography as art began, she first focused her camera on her foster sister, Ellen, and on her grandmother who suffered from Alzheimer’s. Garmire refers to both of these women as her muses.  Garmire uses her photography to document the emotional, spiritual, and visual experiences she has observing and interacting with her subjects.  She refers to this action as “falling in love with [them].”  Garmire’s love included her first muses and grew to include the residents of her grandmother’s nursing home, as well as complete strangers.

Garmire attended Eastern Oregon University in 2001.  In 2003, she moved back to Portland to attend Portland Community College where she worked as a photo lab technician.  She also worked a variety of care-taking jobs at that time. She received her Associates in General Studies in 2010.  She was a full-time caregiver for three different individuals with disabilities at the time of her application to A Somewhat Secret Place: Disability and Art.

Biography written in collaboration with the artist.

e. Molly Gramire: Disability Art and The Aesthetic Stickiness of The Disabled Body

Ellen’s Hand Study (1-6) was the very last addition to my curation.  Matt Stangel of the Portland Mercury featured it in Disarming Disability: Disability and Art Start at the Door at A Somewhat Secret Place on July 28, 2011, as part of an in-depth review of the exhibition.

As a counterpoint of sorts, I hung Garmire’s piece near the work of Charles King: a remarkably persuasive political depiction of a protester with a disability; and adjacent to Howard Edelman’s portrait of his beloved dog titled Sindjar, which did not contain anything about disability, but had been photographed by an artist who is now blind.  I intended that this arrangement would inform the guests that these three works contain distinctly different relationships to, and utterances about, disability.

Ellen’s Hand Study (1-6) consists of two prints, both of which consist of three successive rectangular frames in landscape orientation.  The two prints share a frame, mounted in a mat with two windows cut in landscape and stacked parallel.  A thin black line, which is presumably the edges of the film’s frames, surrounds each of the individual images. This piece, as a sort of diptych, requires observers to look at the top image left to right, then move their gaze down to the next row, as if reading.  Perhaps this lends to the feeling that there is a sort of a story to the image, notably a story without a detectable plot.

The image feels old-fashioned.  It was shot using 35-millimeter black and white film and processed by hand, which contributes to a vintage appearance. Adding to this antique look is overall warmth of the lights and darks.  Garmire used a photo process called silver gelatin printing with a sepia-selenium tone, creating a red-ish, brown-ish purple cast to blacks, mid tones and lights.  Many well-preserved antique photos have been printed using similar processes, as selenium and sepia toning helps to extend the archival life of prints.[xxiii]

The work is a sort of chronophotography, which is defined as “One of a set of photographs of a moving object, taken for the purpose of recording and exhibiting successive phases of the motion.”[xxiv]  A famous example of this is in the photography of Eadweard Muybridge, the father of the technique and the technology. However, these do not use that same technique: an observer might perceive that the sequence is taken over time, and is perhaps unplanned; the camera itself has a sort of motion, moving back from the subject between each frame.

The subject of the six photographs is the left hand of a reclining figure whose body is barely included the frames. The figure enters the frame from the bottom left corner.  The hand is central to the composition.  The hand is in a different position in each cell and movement is therefore implied.  Working towards this sense of movement is the stacked format of the framed work, with the suggestion of movement from cell to cell, as all the negatives were printed together, uncut.  All of this lends to a perceptible feeling that the hand movements may be either a sort of language or an expression of some type.

The gender of the figure seems ambiguous.  The body and face are mostly outside of the composition, and the viewer can only see the side of the face in a foreshortened view. As the sequence progresses, the face comes into frame, along with the figure’s right shoulder.  In the last frame, the subject’s mouth is visible. The mouth is opened and relaxed; the eyes are eclipsed by the figure’s cheek.  Her eye seems open, but the partly-visible eye does not meet the camera’s gaze.  So it is that the title may indicate the subject’s gender as female for most observers.  A light colored blanket, a dark, slumped velvet pillow and dark colored velvet plush couch cushions are illuminated by what is possibly an end table lamp, outside the upper edges of the frames.

The camera stands low over the subject, not gawking; it is too close to gawk.  There seems to be, as the title indicates, studying here.  But what kind of study is this?  It does not seem to have the objective of labeling the subject a freak, such as in medical curiosity photographs.  Rather, it is the gaze of a caregiver or companion; that of a mother, sibling or dear friend.

The setting that we perceive the subject in is that of a home, which lends strength to the feeling that there is something intimate to the image’s utterance.  We see the couch that the figure reclines on: a soft pillow, supple cushions; the cleavage of those cushions like that of mother’s protective and comforting bosom, a nest of sorts.  The lamplight cast from above is familiar, like that of an evening lamplight in any living room.  Images of such places inherently hold a sincerity, of the hopes and freedoms of home, that the exterior world cannot offer.  We are aware that the camera is an instrument by which this private moment is publicized.

How could one describe the presence of the camera, of what it seems to be doing, and how this relates to the setting of the closed space of the home?  I am reminded of my most loved passage from Gaston Bachelard’s The Poetics of Space.  He wrote:

We live fixations, fixations of happiness. We comfort ourselves by reliving memories of protection. Something closed must retain our memories, while leaving them their original value as images. Memories of the outside world will never have the same tonality as those of home and, by recalling these memories, we add to our store of dreams; we are never real historians, but always near poets, and our emotion is perhaps nothing but an expression of a poetry that was lost.[xxv]

Bachelard’s use of the word memories here is not to say that memories are reliable sources of information, but more as a resource of universal emotional depth.  I feel he has captured a very real phenomenon – the concept that the home holds within it such emotional depth and preservation.  But is this not also what a photograph shot in something like Henri Cartier-Brosston’s “decisive moment” attempts to do?[xxvi]  I think this could extend to how we study others in our private lives and how through photography, intimate moments seem to be encapsulated, as if to remember “their little things.”  I perceive all of this as evident in the relationship of the subject, setting, camera position and framing of the image.  It is as if we are privy to one bending down to see what someone is up to and then backing off, ever so slightly.

I like to think of the photo as an implement of memory; though incomplete and still, it holds our memories in the form of a document containing, in miniature, the fleeting moments of life.  This is not a new observation by any means, but this is the way that I think of all art.  Art is making physical something that has been experienced, especially work that involves representation.  The arts are (at least for me) a way to hold on to a feeling, moment or memory that always flies away.  I think of representational art as an action that is born of a hope: to preserve the life of a moment, as my spirit understands it.

Photography historically has had a real, detectible, impact on both the context of disability and the visibility of it in culture.  Since this image seems antique, the viewer may, as I do, think on it in relation to the display of medical curiosity photography.  What does this image impart in relationship to that history? It is not hard to think of the history of disability in photography when we consider the utterance of Ellen’s Hand Study (1-6).  The placement in the gallery led to the understanding that the subject has a disability. The antique feeling of the image lent to this association, meaning that the photo technique employed within this context is visually reminiscent of medical curiosity photography.  But here there are no painful looking apparatus like those used, in general, to prop figures up in position for long exposures, nor diagnostic items like yardsticks.

But what about the title?  It seems rather frank; is it like medical curiosity labels? Tobin Siebers notes that the Nazis displayed denigrating labels equating degeneracy with disability at the Entartete Kunst exhibit, where images of deformity and diseases were placed beside modern art, calling it “Entartete Kunst,” meaning “Degenerate Art.”  He also points to the Mütter Museum’s Medical Photographs: The Art of Making Strange, in which the museum advertised the collection as “disturbingly informative.”[xxvii]  Thus, disability has been labeled as freakishness, something to be unsettled by and as inferiority.  Garmire’s piece has none of these suggestions, and neither does the setting in which it was displayed; the fact that Garmire included the figure’s first name in title gives a sense of mutual respect.

Garmire’s camera does not seem distinct from the subject as it is at a close distance.  Ellen is not propped up on display; she was, it seems, relaxed.  Notably the subject’s face is hidden at first.  This is something which changes as the viewer moves the gaze from image one to image six. There are many details in this image that could point to the respect the artist showed to Ellen.  Garmire’s work brings intimacy to photography of people who are severely disabled for she chooses her photographic subjects primarily from people personally connected to her and shoots them in a way that allows the viewer to perceive the familiarity.  Garmire writes:

Ellen was visiting at my house one day and I saw her moving her hand in a way that seemed magical. For years I did not know which negative to print; then I realized that all the negatives were one body of work, one moment. The title Ellen’s Hand Study comes not only from Ellen or me, the photographer, but also the viewer, in that they are all studiers of these hands. Ellen was merely moving her hand in a way that fulfilled an urge, was entertaining or was actually studying the feeling of movement. We as viewers will never know.  Ellen is also blind and this I believe adds an element to the images.

When I have observed all I can, I turn my attention to the artist’s statement. I feel validated with the assertions I made in analyzing the image but I am also surprised.

I am not sure what the subject’s blindness has to do with the image. What could it inherently mean or add?  This is puzzling to me since photography – as I do repeatedly state – is stubbornly visually experienced more so than all the other gallery arts.  So I ask, How would photography actually serve the blind? Some artist have tried, but to date I have not witnessed an example that depicts blindness or the Blind that would service the blind. So if it adds something – though the work does not give this up to us in its utterance – I wonder for whom it adds something.

Let us now consider an attempt by Sophie Calle to represent something of blindness.  Calle, a French writer, photographer, installation artist and conceptual artist has published several books about her study of the Blind and how the completely blind remember or conceive of sight.[xxviii]  It seems to me Calle’s work is an attempt to create some relationship between photography and the Blind – those never truly serviced by the medium because of its visual form.  It should be noted that as she interviews and works closely with blind people she has created the kind of relationship with PWD which I suggest is needed by all artists working in the genre of disability art. But still, here Calle seems to miss my other suggestion of a creative imagining as in Nussbaum’s philosophy – her work does not fully take into account our needs and desires.

The aim of Garmire stating her subject’s blindess may be unclear, but makes me ask the same question about the aim of Calle’s project: for whom does she really make her work?  I think Calle fails to make photography have a meaningful relationship with blind observers and the Blind in general as there are a few design problems and subsequently ethical problems within her work.  However, the aim of her project is clearly addressing the Blind, which is interesting, and it manages to not be completely exploitative.  As a possible benefit to the Blind, Calle’s work could be said to attempt to humanize the Blind by providing a resource to answer the multitude of questions that sighted people seemingly have about the Blind and our concept of vision.

Nevertheless, I don’t care for Calle’s work, and this is why: There is braille in some of her books, but no real description that matches the actual photos she took; just the writing of the blind people or the interviews she took.  Notably the braille in the books is also unreadable for most braille users as the embossing is in too low of relief.  It would be like reading 10-point font print in gray ink on navy blue paper.  As a side note, there are whole sections of printed text in very small print and no audio books available.  This leads me to the belief that her perception of blindness is rather narrow and as a result she does not consider the Blind as ideal observers of her work.  It is my point of view that this is exclusionary and therefore exploitative.

In Chapter 5, I will discuss in depth the work of Georgina Kleege who writes about particular visual uses of braille as a reminder for the sighted of the Blind.  I would think Calle’s book design is this sort of useless braille that is for the aesthetic benefit of the sighted.  As Calle’s braille pretends it is useful by being printed in a book (as opposed to over-sized and in a space where one would never read it) it is worse than the type of braille Kleege identifies when positing that braille in art and design is mostly used for kinesthetic visual motifs.  Kleege condemns such uses as exclusionary.

I would be interested to know more about how Garmire conceives of blindness playing a role in the utterance of this work.  I would argue that there is no detectible utterance or element that conclusively tells us Ellen is blind; therefore, this is in the realm of the artist’s relationship to the work and not the viewers’.  Further exploration by “visual artists” into making photography relevant to the blind clearly has potential in that it seeks to represent a little explored topic in photography that directly relates to the form of the medium.  However, such representations hinge on tastelessness when the work produced is not for the Blind.  Garmire’s saving grace is that the images do not address blindness, subsequently the work doesn’t pretend to be for the Blind.  Thus this work does not tangle with issues of access. (Which calls to mind my question, for whom are the images intended?)

On the other hand, the ambiguity of her statement raises issues about the very nature of the medium, but also causes me some concern that artists today do not consider that to make an image relatable to the Blind, access must be addressed, and not by the curator alone.  I did, as I stated in the opening of this book, structure the gallery to be accessible to the Blind but in doing that I never changed the meaning of Garmire’s work.  Access for the aim to be realized cannot be an add on.  It must be in the conceptual basis of a work to make Calle’s and Garmire’s supposed aim successful.

Ellen’s Hand Study works on the viewer in a different way than the works of Mr. Ramey, Papalia, and Krishnamurthy. Here there is a body; a body we are to know is disabled either by inference from observation or by reading the artist statement.

In Seemel’s portrait there is a pretty young woman, and even knowing that the subject has a chronic illness we still view the image as a pretty young woman. The knowledge of her illness gives the gift of a beautification and humanizing commonly held perceptions about disability, but one should notice that this only happens with the knowledge provided by an artist statement.  In Ellen’s Hand Study (1-6) we see impairment in the flesh. It is perceptible by the pose and the unusual movements. So something else is happing here. Some viewers may feel a sympathetic response or for others perhaps disgust. These feelings arise from aesthetic judgments about disability that are culturally enforced. Nevertheless, these reactions observers’ bodies have to other bodies (of a kind, be it artwork or a realist image of a body) are truly a part of how contemporary works of art function, commonly rejecting the aesthetics of idealism.[xxix]  As John Berger wrote “the way we see things is affected by what we know or what we believe.”[xxx] So if you were a person who believed that PWD are inferior, this image may give you cause for discomfort or puzzlement as to why an artist would take this sort of body as a subject and furthermore in a loving light.  One who viewed disability as inferiority may also jump to the conclusion that it must be exploitative and not a remnant of a real, respectful exchange within a family.

Thus, I assert that any time a physical sign of disability appears in a work (as a description in literary works or in an image like a photograph of an actual body), viewers have a very different response to it than if the traits that noted the disability are more abstracted ideas.  In Chapter 4 I shall muse on the disability aesthetics theories of Siebers. Like in this chapter, it will largely have to do with a discussion on representation and will be occasioned by disability as grounds for creative production.

Section 3: Chapter 2 Checklist

  • The work in question is a work of high art.
  • The artist’s intention to make the work is understood through the work’s utterance as coming from disability–their own or another person’s–or as a generalization of disability.
  • The work notes characteristics of impairment, be it intellectual, mental, sensorial, physical or combinations of these.
  • The work is not dominated by a disability aesthetic meaning a body of sorts marked by trauma or deformity that makes one think about disability or impairment or respond to it as they might toward an actual PWD.
  • It does not overtly have a political message as in the work does not seek to persuade politically.  There are no signs of protesting a social norm, political behavior or attitude in favor of positive attitudes toward PWD, but it may state or imply personal feeling in response to such things.

[i]             Siebers Tobin. “Disability Art and Vandalism,” Disability Aesthetics. Ann Arbor: University of Michigan Press. 2010. 83-99.

[ii]             Lisa J. Emerson “frequently-asked questions about synesthesia,” Mixed Signals,, (accessed June 5, 2013)

[iii]             Oliver, Michael. Social Work with Disabled People. London: Macmillan. 1983.

[iv]            Brady Haran, “What colour is 27?” Numberphile,, (accessed June 5, 2013).

[v]             When I think of Heathers work, I conceive of it as in the Hegelian Geist of the illness. See: Hegel, Georg Wilhelm Friedrich, Arnold V. Miller, and J. N. Findlay. Phenomenology of Spirit. Oxford: Clarendon Press. 1977.

[vi]             Berger, John. Ways of Seeing. London: Penguin. 2008. 10.

[viii]             Bryana Johnson, “Disabled woman who was almost forced to abort delivers healthy baby”,, The Washington Times, (accessed June 8, 2013).

[ix]             Grandin Temple, “My Mind is a Web Browser: How People with Autism Think.” The Charles A. Dana Foundation, New York, NY, Cerebrum. 2000 Winter Vol. 2, Number 1, pp. 14-22., (accessed June 6, 2013).

[x]   , (accessed May 30, 2013).

[xi]             Go to for more information.

[xii]            The CNIB stands for the Canadian National Institute for the Blind. It is a charity serving the blind and those with acquired vision loss.  They are a very old organization, opening in 1918, and currently have offices in every province. For more information go to (accessed June 13, 2013)

[xiii]           An example of what Carmen may be referring to is audio books or readers to read school materials. Accommodations refer to any measures used to make non-accessible materials or spaces usable by persons with impairments. Students in the United States are required to advocate their needs to teachers and the institution and are often responsible for setting up translation of their materials, which is often time consuming and something that their nond-isabled classmates will not have to do. It could be argued that this is an unfair asymmetrical reality of the university system, which should be addressed by law, as there are now many new options available to teachers that would not require students to do extra time consuming work in making their materials accessible.

[xiv]             I was unable at the time of writing this manuscript to find the names of the readers. However I would like to accredit them for their gift to the project. Please contact me via the A Somewhat Secret blog if you know their names.

[xv]             Please see Anna Geannopoulos, “‘A Somewhat Secret Place’ Explores Disability and Art.” Oregon Public Broadcasting. July 13, 2012., (accessed February 28, 2013).

[xvi]            Grigely, Joseph. 2006. “Blindness and Deafness as Metaphors: An Anthological Essay”. Journal of Visual Culture. 5 (2): 227-241. 227.

[xvii]             Tarkovsky Andrey. Sculpting in Time: Reflections on the Cinema, Hunter-Blair. New York: Knopf. 1987.  42–3.

[xviii]            Wilma Jansen, Johannes Brug. “Parents often do not recognize overweight in their child, regardless of their socio-demographic background,” European Journal of Public Health, Vol. 16, No. 6. Oxford University Press. 2006. 645–647.

[xix]             TED Conferences, LLC , “Brené Brown: Listening to shame” (Accessed June 19, 2013).

[xx]             Nussbaum, Martha C. From Disgust to Humanity; Sexual Orientation and Constitutional Law. Oxford University Press. 2010.  xiv.

[xxi]            OPB, , (accessed June 8, 2013).

[xxii]            Gwenn Seemel, “Sympathetic magic”,, (accessed June 9, 2013).

[xxiii]            “Glossary of Photographic Processes & Terms” The Icon,, (accessed June 10, 2013)

[xxiv]            “Definition: Chronophotography: Source Webster’s Revised Unabridged Dictionary (1913)”,, (accessed June 10, 2013).

[xxv]            Bachelard, Gaston, Maria Jolas, and John R. Stilgoe. The Poetics of Space. Boston: Beacon. 1994. 6.

[xxvi]           “To me, photography is the simultaneous recognition, in a fraction of a second, of the significance of an event as well as of a precise organization of forms which give that event its proper expression.” Henri Cartier-Bresson. The Decisive Moment. New York: Simon and Schuster. 1952. 1-14.

[xxvii]           Siebers. 44.

[xxviii]          Calle, Sophie. Blind. Arles: Actes Sud. 2011.

[xxix]            Siebers. 2.

[xxx]            Berger.  8.

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