Chapter 4 Disability Pride Art

Dedication For my lifelong friend Kamden Vencil.

Section 1: What is Disability Pride Art?

Disability pride art is a term that you might not readily find in books on contemporary art theory, but it is used widely in disability communities.  It could be used to speak about works of gallery art, literature and performance.  I observe that it is commonly used loosely to connote three types of work.  Firstly, this term may be used to describe works that are simply by people with disabilities (PWD) where disability may or may not play a role in the artists’ practice, which is what I have heuristically termed ‘disability in the arts’ in Chapter 1.  Secondly, it may be used to categorize work that seeks to represent disability, impairment or chronic illness, which I have heuristically termed ‘disability art’ in Chapter 2 and 3.  Thirdly, disability pride art as a term is used often to refer to works that are critical of mainstream culture and through such a critique are positioned as profoundly political art. In such works, the creators thrust upon the public the humanity of PWD and disabled bodies literally or as an aesthetic (as discussed in Chapter 3). These works reveal bodily and mental variations unashamedly and often joyously.

In this chapter, I would like to challenge this murky term, ‘disability pride art’ and I shall call for a new use of this term.  I would like to keep the phrasing “disability art” but replace the meaning and the associations it carries.  I am suggesting a rebranding.   Disability art has unfortunately and erroneously been passed off in ambiguity as a type of art almost exclusively in disability cultures when it is not.  It is therefore often identified as low art or outsider art.  I think this rebranding must happen since as I have demonstrated, there are terms that could be used to describe these first two kinds of art.  So I ask, why not try to speak specifically about these matters?

I hope that defining this sort of work will bring it more attention and therefore allow a more focused conversation about it in the arts.  As far as benefits for disability culture, since I believe this art is political, such focus can only help the main project of these works, which is to engage a wide audience in breaking down barriers of oppression.

Disability pride art, when proceeding from disability culture(s), has several attributes that are unique to it.  These works are marked by: advocacy, camaraderie between PWD and our able-bodied allies, education about PWD, and a spirit of a serious type of play.[i]  This spirit may manifest in nonsensical or silly actions of the creator to interact with other performers, or their audience, or the medium and above all these behaviors are spontaneous.  Since this sort of art can play an enforcing roll in the construction of disability cultures, it could be considered a folk art movement since the goals for disability pride art are sometimes utilitarian – almost making work that could be thought of as propaganda – simply put, works meant for a limited audience.  So then it is indeed important to think on the presentation of a given work.  That is, we should ask on a case-by-case basis if it is made with the intent or if it is displayed with the intent to participate in the fine art dialogue.

When Tobin Siebers writes on the culture wars he states that while people rarely think on everyday objects and people’s bodies and minds as inciting aesthetic judgments, that “sickness and health” do in fact trigger aesthetic judgments. He notes that such judgments are often thought of as different reactions not like those of aesthetic judgments about works of art.[ii]  Nevertheless Siebers recognizes that they are aesthetic judgments.  He illustrates how the culture wars of the 1960’s and their aftermath did use aesthetic arguments rather then political ones.  He builds on this a three-point call to action, first stating that for this reason disability studies needs to take aesthetics as a tool in understanding, for instance, the construction of stereotypes about PWD through art.  Then he urges activists to use aesthetics to understand the many ways disability is censored–tucked away from public gaze–to enable such activists to confront prejudice in representations and accessibility in built environments.  Then he calls for what I am heuristically calling disability pride art, and he suggests one of possibly many projects of this sort of art.  Siebers writes:

Finally the disability community should continue to intervene vigorously in culture wars, wherever they may be found, creating artworks, performances, theater and political spectacle, imprinting disabled bodies and minds on the public landscape, and inventing new modes of beauty that attack aesthetic and political standards that insist on uniformity, balance, hygiene, and formal integrity.[iii]

The fine art world can answer this call too. For instance, I do not identify as being a part of any particular disability culture or community.  In fact I feel much like an interloper going from community to community. I feel I exist inside the fine art culture but now quite recently have made friends in many different communities and disability cultures.  I wrote a book that surely answers Siebers’ call.  Thus, I can think of no reason that other artists and writers couldn’t do the same if able bodied and outside of the disability community.  It is notable that many of the examples Siebers discusses in his work are by people without disabilities.  We all should and can answer this call, as an exercise at the very least, since it truly tests the limits of fine art and aesthetics.

What do I mean when I say disability culture?  Some intellectuals and activists do not believe PWD have a culture of commonality (and therefore cannot have shared art).  To some extant this is true in that there really are many cultures of disability. Sometimes these disability cultures are in conflict over even the identity that ties them together.  For instance, the National Federation of the Blind (NFB) are in conflict with other groups such as the Special Olympics who take person first language.  The NFB stated:

We believe that it is respectable to be blind, and although we have no particular pride in the fact of our blindness, neither do we have any shame in it. To the extent that euphemisms are used to convey any other concept or image, we deplore such use. We can make our own way in the world on equal terms with others, and we intend to do it.[iv]

The inference of such a statement is rather divisive; saying that it may be respectable to be Blind but not be respectable to ally our Blind identity with the disabled by using person first language.  It judges disability as inferiority and something worthy of shame.  It positions the blind away from PWD in much the same way as Siebers posits society censors the aesthetic signs of disability.

During the NFB 1993 Conference (at which the above position was adopted) the NFB never addressed that such a position inherently subjugates one sort of persons as inferior. I find the core of the issue to be that there is an unfounded but commonly held assumption that disability is a deficiency.  They in effect created an “us and them” statement emancipating themselves from other PWD and the communities they inhabit. It does nothing in my opinion to support the breakdown of the tropes that keep all people with disability oppressed.  Nor did the NFB acknowledge that there are PWD who take person first language as a point of identity and pride.  In fact they at one point write it shows an intellectual deficiency to use such language, writing:

WHEREAS, just as an intelligent person is willing to be so designated and does not insist upon being called a person who is intelligent and a group of bankers are happy to be called bankers and have no concern that they be referred to as persons who are in the banking business. [iv]

I think that on some level this is mean spirited nitpicking holding, intentionally or not, a bitter note of sarcasm.

Later in the Conference Report the NFB assert that they would not encourage across disability representation for the Blind as it in their opinion it would not be in the best interest of the Blind.  This is the reason why the Portland Chapter was told by the state president and national representatives “with regret” that they could not become supporters of the gallery exhibition A Somewhat Secret Place; because I was representing an across disability discourse and advocacy.  I feel that position actually hurts the cause and the Blind who seek out camaraderie and a connection to the fine art discourse.  I have only contempt for the decision since it seemed to be against the values that the individuals of the NFB chapter seemed to hold. It also reminded me of the many rejections I received to my applications for scholarships to blind organizations to peruse education in the arts; I was told to go into law or something more suited for the blind.

The way in which the NFB pushed their organization away from other disability cultures and communities is a symptom of an understandable mistrust toward disability cultures. This distrust stems from the fact that some disability cultures tend to think of the organized efforts of the Blind community (i.e. culture) as focused solely on independency and therefore based in adapting to cultural demands of normalcy regardless of any (and the many) statements to the contrary.  They see us not as pressing necessarily for equality, but for individual independence.   It could be said blind schools and vocational rehabilitation are evidence of this.

On the other hand, even the art culture dismisses the existence of disability cultures.  Jean Dubuffet, the painter who first intensely studied art by the “marginalized”—that is people in asylums, hospitals and jails, famously stated, “There is no art of the insane any more than the art of the dyspeptics or an art of people with knee complaints.” It could be that he meant there is no consistently a shared style, but he failed to draw that conclusion, always in fact seeking a more visceral aesthetic–one that appeared raw to him.  This failed to consider that the people he collected his art from for his so-named art brut collection were in a culture of sorts.  It was the very marginalization created by the institution that could be said to create a shared culture. One could also think of disability culture in more of a broad and contemporary way as “the willed coming together of people who begin to understand themselves as a cultural minority, as a band that needs to create rituals, codes, languages, art, and behaviors together in order to strengthen their position.”[v] But, as I stated, not all communities that come together as disabled people for a common goal behave the same or have good, supportive feelings about other disability communities.  Disability culture is a continuum:

Disability culture emerges at many different sites and develops on a continuum that ranges from integrative practices where disabled and non-disabled people forge aesthetic alliances to radical crip work where disabled people self-segregate. Disability culture intersects with other identity movements, as evidenced by Leroy Moore’s Krip Hop black poetry performance work, and has to find ways of responding creatively to the ways that different cultural groups address disability in their political understandings.[vi]

So how then could such art be grouped? Perhaps, by naming it?  If high art or fine art, I would say that one of the heuristic terms I have developed in this book could be used.  If political, speaking to support a particular disability culture, I would deem it a type of folk art and term it as such.  For example Blind Community Folk Art. Such terminology would locate it outside of the dialogue of art theory and would place emphasis on its utilitarian purposes. If a given work is not within the fine art dialogue, then a conversation about it in a particular community will surely take the course in whatever way it may finding language within those communities for those communities, but it is our responsibility to make these distinctions so that we in the art world have points of comparison.  Also to name it folk art is to let such works off the hook, one could say, acknowledging that a work of folk art has a one-world view, going against the grain of modernism. Naming it in this way is to say that this is not bad quality.  This is because folk art does not need to go with the grain of modernism since it exists outside of the system which prizes such distinctions.

None of the artists in this chapter currently consider their work as proceeding from disability culture, though most would admit that their work has supportive advantages for disability cultures.  Therefore disability art as a term does not hinge on it being from disability culture.  Rather, what marks it is that it supports inclusion of people with disabilities in mainstream culture.

I would now like to share a few of my thoughts on the political nature of the work as some of the arguments these works make may not seem clear. I find this especially the case if one personally understands these topics. In the following collection of literary works and performances, you will find a wide range of political topics: recognizing PWD as equal; issues of homelessness and institutionalization; and that PWD can and should be allowed rolls in society other than the old stereotypes of objects of charity – perhaps in contrary allowing us to be apparatuses of charity, gifting society with our talents.

Arwen Bird’s Love in Community is a story of love and Bird’s acquisition of a disability. Its political message works softly by accessing our hearts.  It is an educational and an emotional plea stating that at least in her experience disablement is not the end of a life but sometimes an impetus for a new chapter of life.  Bird does not hold back personal bodily details that might make some uncomfortable; rather, she reveals them with no shame and only kindness.  She speaks to our heart to ask us to see her and all people as having commonalities.  It is a plea that is hard to notice as we get carried away by her story of disablement.

            Nathan Say’s Candyland is an anti-self righteous depiction of the plight of those us  (I don’t like “those of us” here….maybe just say “PWD”) who are institutionalized, which he deems as jailed.  His judgments are as harsh as the mournful image of institutional life he depicts.  He states these realities as bringing a shame over him because he cannot witness it and chooses to run from it, but he encourages us to live our lives of freedom fighting against such injustice. He also points out how on the outside of “jail,” life for PWD is not a promised land by any means.  The volunteer reader, Whitney Lawrence, personally identified as able–bodied and she read it with all the fury in her soul.  This work has a political message that appeals to our decency as human beings as it puts the indignities that our society perpetuates right in our faces, cutting us like barbs of the fence that Say repeatedly refers to as the line between us and them.

Charles King’s Portland After Dark seems to me to be an instance of representation of the psychological makeup of people living a life on the streets as in Chapter 2, so it could be considered ‘disability art.’ Yet, in places it has a disability aesthetic because it is told from the point of view of a wheelchair user who makes mention of this extension of his body, so we may draw aesthetic judgments as in Chapter 3.  However, in my curation, I had him display I’d Rather Be Homeless a photograph, as an illustration of his piece of writing.  This transported the context of the work as if the writer was asking, what would it be like if I rejected the system of care I receive and became homeless–not that he ever asked such a question to my knowledge.  The woman depicted in the image is coincidentally Yulia Arakelyan, one of the featured performers. The plea that King’s image makes is heart breaking: her sign asks us to recognize her thoughts and feelings about the care provided and that she will not just submit to what she is given. The work of writing on the other hand shows many dark aspects of the day-to-day survival of the homeless and the difficulties for disabled homeless people who use wheelchairs.  Though we are indirectly asked, we are asked to recognize a broken system.  I displayed King’s photo near Molly Garmire’s Ellen’s Hand Study (1-6) (Chapter 2).

Disabled is a performance created by Carmen Papalia and AJ Vittie which was performed by Elliott Lummin as a display in the gallery. Unfortunately it did not function as miraculously inside as it did on the street. However, the political message still rang out as “this person is labeled and the label is a barrier,” literally a six foot barrier.  It is worth noting I had set a few tasks up for the performance group: first to pick up an item from a local shop; then to checkout the Bastille Day celebration that took place in a local square next to the gallery. They did so and went for a little walk in the fountain, in effect disabling all around them. Paplia helped Lummin with his shoes–disabled helping disabled, Papalia labeled by his white cane with his signature eyeball tip at its end. Vittie photographing nearly each step like a paparazzi brought another level of spectacle to it. It seemed like a sort of protest and a game or prank at the same time. Those unaware of what was happing felt compelled to follow them when they came back to the gallery. About four minutes after they left, they came back with a small crowd who stayed and listened to the reading and participated in discussions around the art. It was not only a tool to get people to think on what disability might mean if it was to boldly walk alongside you and disable your space, but it also raised attention for our little “happening.”

The performance documentation video on display, titled Hoover Method, worked in a similar manner to Disabled, by disabling the everyday settings of  Vancouver, BC streets, confronting the public by using a cane nearly three times as long as a standard mobility cane.  It seemingly does not faze the people passing the strolling Papalia in the video. Although, we do not see behind the camera, so viewers don’t have access to any dumb-founded second glances.  At a few points in the documentation video it seems that people noticed the imposition of the cane, and threw themselves out of the way of it and the approaching Papalia.  It is hard to tell if this is just a reaction they would have to the typical blind cane as this often happens to me while using my shorter cane.  Disability makes it so PWD are shrunk and marginalized.  Children are told not to point and not to be curious in order to be respectful, yet often this teaches children to not ask questions and shames them about learning.

On the other hand, Joy Corcoran seeks to teach a very direct moral in her plush sculpture and storytelling.  There’s something compelling to an adult about observing and learning from work directed at children.  Who at thirty could not be disarmed by story time with a woman named Joy? The Seeing Eye Dragon sculpture and the accompanying story tell us that we could all benefit if people with disabilities were allowed to be apparatuses of charity and not only the object.

I think she tricks many adults who come to her story times with their children in tow. The remarks about the afternoon event were mainly from the adults. The children seemed so open to the ideas it was not as much of an earth shaker for them.

I organized the noontime story telling event as I felt that children needed to be a part of this conversation. I have always felt that adults viewed disability as “too much” for children. I think this sets a bad precedent for the adult lives of today’s youth.

Similarly, most parents feel that the art gallery is “too much” for children, never letting the art gallery be a comfortable place.  I think of the gallery and for that matter any setting where art is presented as places that have the potential to grow the human spirit and the connection between people.  Of course some shows are going to be too adult for children since seemingly no taboos are off limits in the arts.  This does not mean that we cannot make a better effort to make a place for the patronage of children in the gallery.  Yes, I believe we have to get them when they are young so they will have a life full of introspection and connection through art.  At the end of this chapter you will find a written version of the story told in the gallery, Iris and the Dragon Aurora, and images documenting the reading where Corcoran presented her sculptures for the children to touch and explore. The children also touched tools used to make braille such as a pocket deposing slight and stylist. This was likened to the braille embroidered on the sculpture.

I found it funny that the literary curator, Helen Healy’s, grandson was able to understand how my mobility cane works.  Most adults are too frightened to ask to fiddle with it.  I felt we ended our month-long exhibition in just the right way. We ended it with the future in mind.

Section 2: The Disability Pride Art, Literature and Performances of A Somewhat Secret Place

a.     Arwen Bird Biography.

When talking with Arwen Bird, her childhood in Newfoundland and Alberta can be heard in the occasional “eh” that slips into her speech, her general friendliness and her love of fishing culture and community.  After living in the Portland metro area for over 25 years, her accent and identity has shifted to that of an Oregonian.

It is in Oregon that Bird completed a B.S. in biology from Lewis & Clark College.  Upon graduation she decided to pursue her interest in social justice and began working in the field of human rights and criminal justice advocacy.  Among her accomplishments from this chapter of her life are the founding of an organization (Crime Survivors for Community Safety) to give a voice to crime survivors who seek healing responses to crime and trauma for their selves, their communities and policy changes for all Oregonians).  Bird also completed a two-year fellowship to expand this work in Washington State (Soros Justice Fellowship).

After over a decade of advocacy in human rights, Bird returned to her love of fishing culture and biology through the completion of an M.S. in marine resource management from Oregon State University.  Her research is in the ‘human dimensions’ of marine resource issues, such as the planning processes that communities undergo to plan for marine protected areas.

Bird’s activities in marine resources and human rights have helped to shape her belief in individual and cultural transformations as vehicles for social change.  Through life experience and her chosen profession, Bird hopes to help people connect with the importance of relationships, whether that relationship is with the natural world or the people who share space in our lives.

In her free time she enjoys tending to her garden, laughing with her nieces and nephews, and travel with her partner and canine companion.

Biography written in collaboration with Arwen Bird. [small and at bottom of page]

Reading of Love in Community  Photography by Alexander Daniel

Reading of Love in Community
Photography by Alexander Daniel

b. Love in Community

A Collection of Writings By Arwen Bird

Preformed 7/9/2011 and 7/30 2011 [Dates up to you]

     I didn’t get depressed after being paralyzed. At times I have felt oddly ashamed of this fact. This is especially true when the person asking the question seems to have some sort of anticipation or expectation about my answer. Most of the time it seems to me that folks are surprised when I do not have a stereotyped ‘stages of grieving’-this-is-how-bad-it-really-was kind of story. But my actual story, the one that unfolded without stages or expectations, the one that moved at times with the speed of a tornado and at others with the lull of a rainy afternoon, is the story of a journey and a dance, with love.

 ❤

    In the weeks and months following the crash my family and I received a tremendous amount of love. Love came in the form of banners signed by dozens of students at Milwaukie High, cards, flowers and letters from relatives all over the country, cards and letters from people I had never met, inspirational books, illustrated books, children’s books, a box of over 40 kinds of licorice from my uncle, a box sent by Stash Tea Company for my sister and me containing the largest selection of tea that I had ever seen, food from other mothers and fathers that was left on my parents porch each evening for a month after the crash, volunteers who built a ramp up to my parents home, lotions that smelled nice, gifts that cleansed my spirit, people that came to move energy in my body, a poster of an attractive man that my nurses posted over my bed, milk-shakes that my friend Hart snuck past the nurses, friends who laughed with me and family that cried with me…. I hope that I am beginning to convey how wonderfully overwhelming it all was. And this list is only off the top of my head, I am sure that if I sat down with my sister, mother and father, we could fill pages with the ways that love came into our lives after the crash. I remember lying in my hospital bed thinking to myself, how could I, in the face of all this love, feel sad? The scales of my life were inexorably tipped toward love.

Love is not a pie. It is the opposite of a pie. Love is like the cornucopia, abundantly producing, giving, and bringing forth nourishment for any being receptive to its offering. Love is an exponential equation with infinite results. As such, we need a supple vocabulary to communicate the vastness, the depth and the utterly un-namable experiences of love. After the crash the community around me offered gestures, words and time that reflected the supple nature of love. And now, I turn to my community to explore love in all of these forms. I sent a request to friends and family asking them to share “How they experienced love in their life.” I received many beautiful responses. Using the beginnings of a supple vocabulary as a pattern, and stories from my own journey toward living life in a way that fosters love, I offer this quilt, this reflection of my journey with love.

Light, A Catalyst

Hi Arwen,

….As for your love question…

I meditate on the Light that is above and beyond creation. The Light that is in and through creation. Let this Light be my guide. ~A Vedantic prayer

Light = Love and this is where I am at today with how I experience Love.

Love,

Megan

Hi Arwen,

I experience love as an amazing catalyst for transformation or/and a transformative catalyst for the amazing.

Love,
Pam

The last thing that I remember are bright lights in my rear-view mirror and the sense that what was happening to me was bigger, scarier, and more fantastic than anything that had happened in my short life. In that exact moment, as our car lifted off the ground and rolled over an embankment off the ride of the road, I too rolled into a more transcendent space, out of earth-bound consciousness and into a state of grace. I disconnected, or rather connected, to something much greater than myself and knew in that exact moment that no matter what happened that everything would be okay. This expanded sense of consciousness did not stop me from feeling concern for what was happening to my body, nor did it stop me from asking our rescuers about my sister as she struggled in our crushed car; it gave me a foundation. That foundation was revealed through the earth and trees that rose to support our car as it came to rest, suspended over a gully hole. That foundation was evident in the men and women who came to rescue my sister and me. I have danced with that state ever since the crash at times forgetting my connection. When I quiet my mind, I can easily find, a remembrance of that state.

Grace, Touched my Heart

I can give you one example from my youth, Arwen.

When your Dad and I were both 15 or 16, we met in Biology — after school.  We were both in AP Biology, but different classes.  We had been sorta hanging out in the Biology room after school, helping the teacher, etc.  He was so shy and sort of a nerd, but I liked him.  Anyway, I had a rat that was having babies.  She was young, and she’d already cannibalized one litter.  I knew your Dad was worthy of my pursuing a relationship with him when he cleaned out the cage with all the gnawed bodies of the baby rats from the second litter before I ever saw any of it.  When I arrived in the classroom after school, there was my rat, in a clean cage, with the one baby she didn’t eat.  I was so impressed. It touched my heart, and still does.

Just one example.

Xo Mom

     The night of the crash my mom had been out looking for my sister and I when we did not make it home in time for our curfew. She came across the police barricade of the crash site and was directed to go to the hospital. Being a nurse, she anticipated arriving at the hospital and seeing my sister and me with perhaps a broken arms and some bruises. She found much more than what she anticipated. There I lay, surrounded by sensors and machines, my body shivering from waiting in the cold February night to be rescued. I was strapped into a tilting bed, with compression forms surrounding each leg, all to help with circulation and prevent blood from pooling in my shocked body. My neck was dislocated and my back was broken. One of the first things I said to my mom came in the form of an apology for worrying her. In retrospect this may sound a bit absurd, but all I can venture is that I was in a different place. She said to me was that she was just so glad that that my sister and I hadn’t died. I responded, with a calmness and sense of clarity that did not feel like it came from me, rather it came through me, that it would have been okay even if we had.

A Place, Holding, Witnessing… A Tree

      I want to talk about “place” and the experience of both loving and being loved by a certain place. Where I grew up on McKinley Street, there was a maple tree in the front yard. The home I grew up in was often full of tension and forms of violence. As a child, I sought refuge in the tree out front. During the spring and summer, I would sit underneath it and sing. Literally sing to the birds, and listen to see if they sung back. I would climb up to the first branch and sit with my back against the rough bark, dangle my feet into space, and eat a chocolate bar. Once, I even climbed so high up the tree that I could look out over the top of our house, all the way to the copper-dome of city hall downtown. Sheltered underneath its canopy, I found a certain safety that didn’t exist in my home. A safety that encouraged exploration to new heights. That encouraged opening of my heart to connect with other beings. The tree held my quiet, my tears, and my song. That kind of holding, and witnessing, I experienced as love. In that tree, I felt love. I wrapped my arms around that tree. I talked to that tree. I hooked knees, ankles, and elbows around the branches of that tree. I trusted the tree to keep me safe, and I sang to it in thanks, and with love. I loved that tree! I remember that many years later (as in, 15 or 20…) I went back to the house on McKinley Street. The tree is still there, out front. In my memory, the tree is giant. As big and all-encompassing as any redwood or cedar or doug fir. But in my adult’s eye, I saw the tree to be barely taller than the house – 25 feet at most. It wasn’t the size of the tree that I experienced to be massive and expansive – it was all the love that I felt for the tree, and experienced in the tree – those were massive, expansive, and full.

luv,

.t

Mornings at the hospital were calm and quiet. After the initial flurry of nurses taking vital signs and doctors making their rounds there was a sweet calm that existed in my hospital room. My aunt would come to visit during that time, on her way to teach elementary school. The two of us would sit and enjoy the view. Sometimes I would doze and she would read. I found her presence calming. She tells a story about coming in one day and commenting on my grand view. From my hospital room I could see rose gardens and a lush green canopy of deciduous and evergreen trees immediately below my window. Being high on a hill, the view included quite a bit of the south part of Portland, and on clear days Mount Hood in all its splendor. She said that I had the view of a rich person, and I responded with the confidence of love, “I am rich, Aunt Jeanne.”

Atomic Binder

     Love is such a simple yet complex set.  Just yesterday I experienced love of nature.  I took two friends to Spring Park and gave them a tour.  We loved being outside. I loved the attention I received while sharing what I know about the park and I love the physical feeling of the exercise and the way my body feels afterward.

I believe that no greater love is experienced than with children.  For example our grand children are loved automatically and unconditionally just as our children are.  The big pay of is when they show their love in return for example by learning and saying your name, by asking to “do stuff” with you and by trusting you completely.  You know this love when all you have to say to a child is “come with me” and they do without question. This is perhaps the greatest love and the greatest responsibility.

I believe love is intangible. It’s like the glue that holds the nucleus of an atom together. The atomic binder is an unimaginable force that compels a mass of positive particles to stay tightly together, which if left on their own would fly away in their own direction with amazing speed.  This force was quantified as E=MC2.  There may be such a formula for people as well.  Love is the incredibly strong stuff that keeps domestic partnerships together even though individuals, by our very nature, have great resistance to being so close in the same space at the same time.

Dad

Having a disability necessitates problem solving. Immediately after the crash, my parents acted as a team to help me navigate the quagmire of injury, disability and bureaucracy that I suddenly found myself mired within. My mother is a nurse and used her skills and experience to advocate for my health care. She did her best to help humanize me in the eyes of the people who would work to put my bones back in place. She advocated for me to be able to receive acupuncture and shamanic healing while in the hospital. My father is an engineer. Since the crash, he has been my wheel-chair mechanic, physical therapist, advocate with insurance and social security bureaucracies, firm believer in what I am capable of and constant cheerleader. I could not have asked for more loving parents and better advocates after the crash. In the years since, they continue to provide constant support in my life. The love that they reflect manifests not only in their words, but also in the endless ways that they have acted as ‘atomic binders’ in my life.

Tenderness, Softening, Gentleness, Ecstasy

Hi Arwen,

I experience love as something that expresses out of my body in a form of tenderness, softening, and gentleness that allows me to be deeply intimate with my true light.

Love is always in relationship to another being so that it can act as an extension to precipitate out from others.

Will

  My first inclination: I feel I experience love in three ways: when I am with my family, bodies touching, no words; when I can feel the vastness of our natural world; and music that gives me goose-bumps and a feeling that I am not in my body.  When the three of these are combined: ecstasy.

Thanks for the chance to reflect!

-Tobin

      In the fifteen years since the crash I have experienced chronic physical pain. Until recently, I viewed my body and my spirit as the same and so after years of being in pain—each day of aches, stabs and jabs of pain simultaneously eating at my soul—I was beginning to feel like an apple core. It was only earlier this year that someone helped me see that my spirit did not have to experience that same pain. When you feel like an apple core, there is no room for tenderness, ecstasy or gentleness, simply because there is very little left. I am beginning to connect again with the state of grace that I once knew and view myself as a whole apple within a physical existence of pain. Being in pain for the past fifteen years has taken its toll on my spirit. I am slowly learning that this reality will not change and am giving up spending energy hoping for something different. Because what is left is my ability to connect with tenderness, with gentleness and with ecstasy of spirit, no amount of physical pain can change that reality.

 A River

Hi Arwen –

I have a powerful image that stays with me from an experience I had while undergoing/passing through a painful time in my life.  I was in the midst of a long period in which I thought that love was gone, or had been removed or rejected or that something was broken inside me, that I wouldn’t love again as freely as I had before this dark time.

And an image came to me of my self as a rock in a river, as if I were resisting the water, stubbornly, immovable.  And then I saw that the river was love, and that it started somewhere in the distance beyond where I could see and flowed on, all around and over and even through me, on into the distance beyond where I could see in the other direction.  That image told me very clearly that love flows out of and around me always, that nothing can stop it, that my little rock-like self was completely part of love, no matter how hard and dark I felt. It is an image that comes back to me often, and I don’t know if it would work for others; it explains something to me that I can’t quite put into words.

Love

Cynthia

One of the most challenging aspects of having a disability has been the sense of isolation that I have felt. I have felt like a rock resisting the current of a river, mired in muck at the bottom of a lake, and exposed to the elements atop a great hill. I hunger for experiences that foster my connection with others, to find the other rocks in all of these places. And yet, for the first fifteen years, so much of having a disability seems so disconnected from the realities of the people around me. There is a twisted aspect of my personality that feels secret glee when I do have experiences that the people around me (the vast majority of whom are able-bodied) can relate to. Broken hearts, burns from coffee or defective seat heaters, arguments about balancing time with friends and family, cysts on my ovaries and concern over the future of the planet are just a few subjects that I find secret glee in being able to share with others. Most of the time they can relate, listen and maybe even share their own stories. In those moments, I feel joy. I have found a kindred rock! However, the other half, sometimes two-thirds of my life is spent navigating the physical, emotional and spiritual realities of having a disability. Peeing my pants on a daily basis, advocating with providers and insurance companies to pay for catheters, the difficulty of moving energy in my legs, suspicion from doctors about the sources of my pain, being invisible sometimes, being overly visible sometimes, lacking sleep because of the searing pain in my back, not being able to visit friends because of the stairs up to their homes, and the list goes on an on. As a survival skill, I have learned when and where to share my feelings about challenges related to my disability. I don’t want to ruin the illusion that the person before me is a kindred rock, if I don’t share with them, we can both pretend.

A wise friend of mine once shared how heart-breaking dealing with racism is for her. In particular, she was relating the feeling she gets when people she loves and cares about show ignorance around issues of race and racism. I feel the same way about able-ism. When I have shared an experience of discrimination, hoping for connection and instead get judgment, apathy or a just plain glazed-over expression from the person before me, it only digs the wound a little deeper in my heart. I feel once again like a lone rock, resisting, sinking, feeling exposed. It has only been as an adult—perhaps because I’ve been able to listen more to the experiences of others—that I’ve realized that this sense of isolation is not particular to being disabled. In fact, we all seem to face isolation sooner or later in one form or another. I’ve learned this from listening to other people who face suspicion from doctors due to race or gender. I’ve learned this from listening to others talk about the difficulties they have sleeping, from pain or stress (or both). And, I’ve learned this from realizing that my struggles are not unique, they are particular when it comes to my disability, but essentially it’s the same discrimination that creates racism, sexism, homophobia, the list goes on… I find strange comfort in that. I am not alone, there are many kindred rocks rolling about this great big ocean of love.

Compassion

      I experience deep compassion when I look into the eyes of another person and realize that they have been quietly, deeply listening to me as I share my story. Much like the realization that love is flowing all around us, when we find ourselves resting in compassion, we also find healing. Love in a compassionate form is warm, welcoming and empathetic, in contrast to the cold, harshness of projected assumptions (like the ones that I discussed at the beginning of this essay).  We can have compassion for ourselves, by recognizing the love that flows all around us. Or we can channel that love by offering empathy to someone in need— really seeing them, their experiences and desires.

When we share compassion we demonstrate our belief in the humanity of another person. Through the years, I have become a believer in the concept of ubuntu.  It is a Zulu word, and loosely translated means “I am not complete without you.” Our communities will not realize their full potential, and I as a member of many interconnected communities will not realize my full potential, as long as anyone suffers and is therefore unable to bring forward all they have to offer for our mutual benefit. The destiny of Kevin, the man who caused the crash, and my liberation are intimately connected. To have compassion for Kevin is to offer that same compassion for myself. As such, I hope for my community, to regard Kevin as a human being as it holds him accountable; a human with hopes and dreams, and with the ability to create good in the world.  Ultimately as Kevin is restored, I will be restored.

Therapy

     A few of the people that I sent the request to responded by saying that they could not respond. Ironically, I felt a tremendous amount of love in their responses. I have included one of them, perhaps the one that best exemplifies the love that I feel in community… even when those sending love may not even be aware of the gift they are sharing.

Good God, woman! I wish this were an easy question for me. I’d love (love) to contribute to your paper, but I think I need more therapy first.

Good luck, hope you were able to weave a nice little story out of this project.

Love,
Melissa

c.     Nathan Say biography

Nathan Say began writing poetry in 2007 when tasked with writing about conflict as part of a final writing assignment for a literature class he was taking while attending Brigham Young University-Hawaii.  “We could write in any genre, and I decided that I would write a poem.  I think I chose it because I thought it would be easy.  I didn’t know that assignment would turn poetry into the love of my life.”

While attending college in Hawaii, Say developed his disability identity by realizing that a difference was palpable between him and his peers.  He studied this difference through his undergraduate education which culminated in Say teaching a Disability Studies course (while still in school) with the assistance of his mentor professor.

Say lectures widely in community college and university classrooms in Hawaii and California about the disability community and the disability experience. He is also a nationally known disability rights advocate, having served on several national committees, and chaired the Statewide Independent Living Council of Hawaii, a grassroots disability planning agency mandated by Section 504 of the Rehabilitation Act.

Biography written in collaboration with the artist. [small and at bottom of page]

Nathan Say Portrait

Nathan Say Portrait

d.     Nathan Say Writer’s Statement

In all honesty, I came to Poetry completely by accident.  We had a final project due in a literature class I was taking.  We could write in any genre, around the theme of conflict.  We had three weeks to complete it, and on 11:45pm the night before my 9am class, I had nothing.  I started writing the words that would form the base of my poem, “Hands of Another.”  I would let the words seep into my mind, and in my head I would see those forming sentences that would plop out onto the page.  I took the poem into class that day, and read it aloud.  The class was spellbound and in that moment I realized I unearthed a gift.

The writing process for me is all encompassing.  It is a five sense experience.  Poems seep in my mind for days before anything hits the paper.  Part of this, I believe is due to my multiple disabilities, and seeing things on the page literally causes me anxiety.  It makes it permanent, finished, unchangeable (in my mind anyway; in moments of solitude, that statement feels different.)

One of the traits of my poetry is that I am very good at using imagery to describe the scene, and I want the reader/listener to come away being moved and changed.  Because a lot of my work deals with identity, and the multiple intersections that I sit at, I want the reader/listener to realize that disability is not a rosy stroll in the park, some (most) days it’s a painful experience.  Because I write about a painful experience, this also makes it doubling exhausting for me as a writer because most of my revision is based around me looking at images, phrases and sentences and figuring out “How can I make this reader experience disability the same way I do?”

The biggest complement I ever got was during a reading one of the listeners commented that they felt like they had been punched in the gut after listening to my work.  While it is never my attempt to induce the reader/listener of my work into feeling pity, if I can shed light on the disability experience and make the reader/listener walk away realizing that disability is completely socially constructed, and that they can do little things to make everyone’s disability experience more positive, than I feel I have succeeded.

Candyland, actually falls into the category of “Spoken Word Poetry.”  It is Poetry that is meant to be performed to an audience and not written down, which is why the form is loose.  Some of the best spoken word artists never write their material on paper.

[Next page]

e.     Candyland

By Nathan Say

Preformed by Poet Whitney Lawrence

9/30/2011

***NEWSFLASH** **

Every single statistic ever written about a person like me would tell you, I shouldn’t be here right now:

They would tell you things like:

Number of Disabled Americans: 60,000,000

Percentage of Disabled Americans Who Will be Sexually Assaulted At Least Once: 97%

Number of Disabled Americans Institutionalized: 3,000,000

I cringe when I hear the word institutionalized.  It makes the hair stand up on my neck, the taste in my mouth turn to metal, the blood in my veins turns cold.

Once Upon a Time, I thought I could save “them.”  Them: those locked in rooms, men and women patrolling the area to keep you “safe”  Them: Those not like me, the less fortunate, ones who know no better. Them: Those wrapped between corridors of concrete and steel, where the barbed wire fence is the sky. Them: Where an IQ test determines how smart you get, how far away from the barbed wire fence you can go, how much bullshit stigma you’ll have to endure.  Them: The retarded, the syndromed, the lame.

I thought I could save them.  I Knew I could save them.

Once Upon a Time in 2008, I knew I could save them through teaching them  poetry.  I met the volunteer coordinator and she asked me “what could I do with them.”  I told her, I could teach them poetry.  She looked away, compassionate sultry smile turned stonefaced.  She said, You’re the exception, I said, You have no idea.

She told me about the rules there.  Rules like:

Lay them on cotton starched sheets between 7 and 8

Feed them Peanut Butter and Jelly between 6 and 7

Shower them for 10 minutes, in water no hotter than 82 degrees between 5 and 6

Every moment was scheduled and charted, and every resident had to be compliant, which means did as your told, like a robot, without thinking and questioning authority.  They knew no autonomy.

I told her my grand scheme: Every week for two hours in the afternoon, we would write their freedom songs.  Together they would protest and sing, protest and sing, protest and sing until the barbed wire came down and the corridors of concrete and steel moved out of the way, and the sunlight revealed itself, and the attendants would push them outside to buses that would shuttle them away from their prison.

She almost had me sent for a psychiatric evaluation.  She said “It doesn’t work like that.”  Let me take you to the back ward.  I can’t do work there, these are our untouchables, our hopeless.

I opened the door, and stepped inside.  The smell immediately started to burn my nostrils and my eyes began to water.  I saw men and women, made up of no more than skin and bones, there bodies coated with layers of piss and shit that made their skin nice and shiny like layer after layer after layer of Crisco.  It wasn’t because they wanted to neglect them, it was because after all the rules and regulations and charts, for a ward of 85, they had 2 nurses and a nursing assistant to care for them.  She took me to see James.

James was young, maybe about 28 or 29, just a few years older than me.  He said he had been in an accident when he was 6 and had lived in the hospital since he was 12, his parents couldn’t care for him.  He went outside for 15 minutes once a year, on his birthday.

He smiled when he saw me.  A real human, like him… He beamed, his voice no louder than a whisper, he reached for my neck and pulled me close, his mouth was dry, his breath like mothballs, and asked: “Tell me how it is on the outside?  Tell me about the people.”

Before I could say anything, I broke away from his grasp and ran through the barbed wire fence, I’m ashamed to say, I never gave him an answer, and I never taught poetry there, and that night, and many nights after, I drank myself into shame.

I couldn’t bear to tell him what the people were like:

That they look through you and not at you

They look too far upwards and not low enough

And they write you off before you open your mouth

And when you smile, they look away.

And when you say, “Excuse me?” They look down.

And some days, I just don’t want to explain myself, I think

If I have to say “Its OK, Just one more time, I’ll cringe

And sometimes, my mouth hurts too much to make the muscles smile.

And although San Diego is much better,

Some nights, I Just want someone to hold me tight with their two arms wrapped around my chest tightly, telling me, I’m loved.

Today, I’m pleased to say, I’m not institutionalized, but I am an Institution

And I make my own rules for myself, Like:

Eat whatever you want, when you feel like it.

Smile to whoever you want to

Make the rules as you go along.

Don’t apologize for anything

And today, the poetry I write is dedicated to James and people stuck in the barbed wire fences of their mind.

I Hope someday, I will have courage to go back and see him again, and maybe I’ll lie to let his heart rest a little easier

But until then, I’ll protest and sing, protest and sing, protest and sing for him.

f.      About the Reader, Whitney Lawrence

Born and raised in the city of Chicago, the birthplace of slam poetry, Whitney Lawrence has been writing and reading poetry for almost 15 years.  A poetry finalist in competitions in Chicago, New York, San Diego, Portland and Honolulu, Whitney has been renowned for her prose and delivery.  She is also known among the non-profit scene for organizing and performing in events like Rock the Vote, Youth Speaks, [Write Now] and GirlFest, to name a few.

She graced the family of A Somewhat Secret Place to read a piece by Nathan Say – a fellow University of Hawaii Alum and friend of the San Diego poetry scene.

g.     Charles King Biography

Charles King Portrait

Charles King Portrait

Charles King lives in Portland, Oregon. He was born in 1981 in Hillsboro, Oregon, with Cerebral Palsy. He has studied writing under Chuck Palahniuk, Tom Spanbauer and Craig Clevenger, and emulated, mimicked and publicly mocked many others, including Anne Rice, who took his comments very personally.

Charles is currently studying English at Portland State University. He hopes to teach people how to write. King writes:

As a writer, I just write what comes to me, be that something that isn’t very fictitious, like the piece about homelessness. Or something that’s a total fabrication. I kind of just tell things in the order they come to me. In my book case, there are notebooks with titles of novels that it just hasn’t been time to write. I believe in writing the way I would tell you a story, in making the dialogue and the people as believably flawed as possible. No one in my stories speaks “perfect” English, and no one is all that innocent, or, for that matter, completely guilty.

Charles is also a photographer. He works in both film and digital.

Biography written in collaboration with Charles King.

h. Submitted under the title What You Know

Preformed under the title Portland After Dark

By Charles King

Preformed 9/30/2011

             She asks me for a smoke, she’s near yelling the question over Mozart. When you are shouting almost anything can be taken wrong, and I yell back: Don’t smoke.

What the fuck is this shit?

In my ear, Blankets says something about psychological warfare. His voice smiles and he adds something about people not knowing where their taxes are going.

Portland, a place that has bigger problems, spends its money on a PA system and a Mozart album. Ask a taxpayer what is important to them; what they see the city as; what values they feel are most vital to them, and I promise you they would say the tress or the dogs. Not one of them would say they were worried about street kids loitering on the bricks or Pioneer Square after dark.

She asks Blankets.

She asks some kids begging for change.

People milling around everywhere, talking, smoking, drinking. Portland’s living room is theirs now, and none of them seem to mind the symphony the daylight population paid for on their behalf.

She comes back, a smoke in her hand. Her gas station bathroom do it yourself haircut hangs in her face when she sits down next to me. Smoke curling out of her lips.

She asks if I’m new.

Compared to what?

Here.

Portland’s got a hundred twenty eight years on me.

Smart ass.

New is relative, I tell her. I’ve seen some shit.

She laughs with the sound of a hundred thousand cigarettes. Here is an easy one smart ass, where are you from?

A place.

Blankets taps me, his fingers scrape even on leather. He says sleep. He says register; either that or we sleep in Paranoia. He says that wouldn’t be a problem. They call me Blankets for a reason. They call you what they call you out here for a reason. When I was new here, everyone I knew, my mom, Randy, everyone gave me blankets. Since then most of them found new owners. He says there’s no reason for one guy to have that many blankets.

At the very corner of Pioneer Square, my last dollar coin from the MAX ticket machine drops into some kid’s hand begging for change. His hair and his shoes are clean, too clean. The air around him smells like cologne and deodorant.

The busses are done, you know? There’s a place on Stark you can drink coffee until they start again. He nods.

Portland’s streets lay before us, lit in that giant nightlight way, we are little children; afraid to sleep, or just not wanting it to come. The city sleepwalks around us, even at hours when the bus drivers are all sleeping, the streets still move, just slower. A pen in my mouth, my hands fumble in the old Army issue rucksack for the old, rolled up notebook. Cigarette girl gets written down. Her home made haircut, her smoker laugh, our conversation. The stranded kid too, the way he smells like he shouldn’t be out here this late. Mozart.

You forget things when you sleep.

You leave out details if you get too tired.

Your handwriting becomes a mystery even to you.

Blankets takes us to Paranoia, a place he says he has slept on occasion. He says the bricks aren’t as bad as they look. He says more people sleep here than you think. At the top of the miniature Pioneer Square, it’s debated whether we could get the wheelchair down the narrow brick steps, or how safe it would be to try. He smiles that smile, the one that means he didn’t think of that, it changes to the Fuck-it-we’ll-do-it-anyway one.

Dude, you know I hate camping. Even if I didn’t what do you think a brick mattress would do to my back?

Straighten it. Dude, like those Asian chicks that walk on people.

They do that around here? I have the money…

You’re broke. Remember?

Right… To a shelter then?

Blankets leaves out how long the line would be at the shelter. Portland might have the smallest blocks in the country, but a line coming out the door and down the block is the same anywhere.  At the door, the old stairs go past a landing where a black woman is asking for names and weapons and drugs. All the things people wouldn’t tell her about. Blankets gives me that look again, picking me up like he’s just married me and our new home is full of homeless people.

You know, I tell him, I don’t like you like that.

He motions for the guy behind us to grab the wheelchair.

The Gatekeeper asks for my name, and I shrug giving her my real one. First name only. Everyone everywhere just calls me that, I tell her. Even this asshole, he doesn’t know my last name. Ask him. He doesn’t know and I’ve known him forever.

What do people call you on the street?

No one calls me anything. Everyone doesn’t have a name once.

Identification?

I tell Blankets to put me down, at least so I’m standing against him.

My wallet, several opposing strips of duct tape and pieces of Zip-lock bags. Hand made. A product of a couple lesbian girls who run a head shop in Hillsboro, and don’t seem to mind that every day I hang out there. Just to bullshit and write. The Gatekeeper asks if I made it. Then she wants me to sign some papers that say I am who I say, and that it’s fine by me if they keep a Xerox copy of my identification and me saying it’s mine, and it’s fine by me if they keep it until my twenty-fifth birthday.

At the top of the stairs, all this goes into the notebook, the letters arching and some getting lost in the crease it’s been folded. The Pilot V7 blue letters: Paranoia – not accessible. Period. Shelter only

viable when with Rodney. Couldn’t spend my life with him. A shelter worker taps me, her eyes looking over my elementary school handwriting. My arm covers the things that happened up to just now.

She asks if I want pizza.

Not hungry, thanks. A lie.

You can’t stay here tonight. You haven’t passed background. You can have some food though, if you want.

Not hungry. The same lie again, meaner.

            First night – you’re fucked. Don’t come here in the winter.

Blankets resurfaces and I explain the situation to him. We decide the waterfront is our new destination. We decided this for reasons not written down. The waterfront at night is a ghost ship. The waterfront at night is a collection of the corpses of empty Saturday Market stalls and thing held for sacred that were dropped and forgotten. If you lose your umbrella it doesn’t get thrown away, or swept into a pile. Someone picks it up and covers themselves with it, or rigs it against the wind swimming along the river. Someone’s umbrella finds its way into my pack. It’s new home a lot drier than the street.

The water staining and contorting my writing.

In the place where people jog and ride their bikes when the sun is up, is now people around burn barrels eating the day-old stock from Voodoo Doughnut. With slow deliberation, I make my way up to the burn barrel in the center of ten people and two tables of doughnuts. One of the men comes up and offers me his hand in welcome, then directs me to the table where I lay claim to a day-old apple fritter.

The same guy, he calls me Wheels and asks my story. When he doesn’t hear one he tells his own. He tells us how he’s here because his wife came down with leukemia a few years ago, and his company’s HMO wouldn’t cover all the cost. He says how he quit work and used all their savings to take care of her. When she died last year, he says, his company wouldn’t have him back, and he didn’t want to go back to school. This is the next logical step, if you don’t want help, and if you don’t want people setting you up on dates when they think you have mourned long enough.

It’s nice here. Great view. Good guys. Free doughnuts. He smiles.

Further down the waterfront a family of siblings offer us some wine in a paper coffee cup. Leaning against the posts at the edge of the pavement, they tell us their story. Without asking for mine, or ours, they dive into theirs. The oldest girl tells it. Tells how they are all the family they have now. Their parents died in a drunk driving accident. Head on. Their extended family couldn’t afford to take them in, so they came here. Someone said Portland would be better, she says. Warmer. Better programs than Michigan.

When we part ways around Third, she doesn’t tell me where they found to stay, so we keep walking until we get to an all night soup kitchen that Blankets says isn’t bad. We get dished up some soup that is more or less minestrone, and the worker asks my name.

Wheels, I tell him.

You new?

I need to know if I can make it out here.

You shouldn’t be here unless you need to be.

Right, I didn’t realize that.

Just don’t make a habit of it.

Nature calls, and the old buildings in this side of the city were never told people in wheelchairs might one day need to piss in them. In the bathroom, in the street? Who cares at three in the morning?

Me, outside the open door of the soup kitchen, pissing out the Benson Bubbler water in the street. A voice behind me asks my name, and why I would be pissing right there into the street. When I turn she smiles, as if to thank me for the show, and asks me if I have a cigarette.

Don’t smoke.

Damn.

You know, that shit is bad for you.

If you quit, you gain weight, and I’m fat already.

Nah.

I’ll show you, she says. I can prove it.

Her shirt comes up to show me her extra body weight, and I tell her flashing involves her breasts not her belly button. She flashes me, and asks me my story.

j.

 Charles King, I’d Rather Be Homeless,  11”x14”, Photography,  2010

Charles King
I’d Rather Be Homeless
11”x14”
Photography
2010

 

i. Disabled

Installed Series (digital photographs 2009) Disabled  Carmen Papalia & AJ Vittie  Performed by Elliott Lummin  2010  Photography by AJ Vittie

Installed Series (digital photographs 2009) Disabled

Carmen Papalia & AJ Vittie

Performed by Elliott Lummin

2010

Photography by AJ Vittie

 “Disabled” is a series of digital photographs that document a performance that took place in Vancouver, British Columbia, in 2009. The subject of the documentation is the able-bodied performer Elliott Lummin. For the purpose of the performance, Lummin was disabled by means of a corrugated plastic label that was strapped to his body. The photos show Lummin performing tasks such as crossing a city street, dining at a restaurant, boarding a bus and shopping. The concept that the label “Disabled” is capable of impairing an individual refers to the social model of disability which proposes that “systemic barriers, negative attitudes, and exclusion by society (purposely or inadvertently) are the ultimate factors defining who is disabled and who is not in a society.”

– Carmen Papalia & AJ Vittie

Disabled

Preformed 7/9/2011

Carmen Papalia & AJ Vittie

Performed by Elliott Lummin

Photography by AJ Vittie

6 78 910 11_b

j. The Hoover method

Carmen Papalia & Amanda Joy Ivings

(video)

image of some sort caption coming

The Hoover Method is a document of a performance that took place in 2009 in which Carmen Papalia navigated a highly populated urban space in Vancouver, British Columbia, with a 14 foot mobility cane. While using a cane of this length Papalia consume the entire sidewalk and create a visible distance between Papalia and his fellow sidewalk travelers. Due to its exaggerated length, the cane is cumbersome to use and does not operate as a conventional mobility aid—it instead transforms me into an obstruction for oncoming foot traffic.

The title of the piece refers to the Hoover method for mobility—a method in which a visually impaired traveler uses a mobility aid known as a long cane. The name “Hoover” refers to the creator of the design for the long mobility cane: Dr. Richard Edwin Hoover.

k. Joy Cocoran biography

Joy Corcoran was born in Memphis, Tennessee, in 1960.  She moved to Portland, Oregon, in 2006, in search of cooler weather and more accessible public transportation.

Joy Corcoran has written stories and poetry most of her life but started making art in her late 30s.  After treatment for depression she became very hungry for color and began to embroider, a skill she learned as a child.  Soon she began making art dolls, wall quilts and cloth sculptures.  She is self-taught but has spent much time studying the works of other artists and combing the library for books on artistic techniques.  Art and literature have always been sources of inspiration and growth for her.

Much of her work concerns the challenged body and perceptions of beauty and strength.  “I try to bring a sense of wonder to the ordinary.  Almost no one has an easy life and yet we have very mixed and often negative feelings when we see someone whose body bears the marks of life’s challenges.”  She tries to emphasize the mythological.  “In mythology, gods and goddesses go through devastating physical transformations – they have their bodies rent asunder, they turn into trees, they shape shift, and they pass between the borders of life and death.  But it’s through these changes that they gain their sacred powers.  In watching people go through the transformations associated with disability, I see manifestations of the same sacred power.”

When she was sixteen, Joy developed a neurological disorder that first presented itself as epilepsy but later caused degeneration of the nerves in her lower body.  “I’ve had to deal with being a medical mystery, mobility limits, internal problems, fatigue and pain for most of my life.  Because of these circumstances, I’ve been privy to a world of stories that I would not have known.  There is so much shame, secrecy, and misinformation about physical difference that it’s a rich source for art.”

She explores and celebrates the body in transition – from transformation to transcendence.  “I like using fabric because it’s touchable.  Cloth figures bring back feelings we had as children, when the lines between imagination and reality were not so distinct.”

In order to avoid racial markers, she often uses colors and prints rather than skin-tones for her figures.  “I want people to concentrate on the gesture and the energy of the work – which is often whimsical.  I also like to leave conspicuous seams and stitches as symbols of the patched together nature of our lives – our compromises and scars made visible.  We are tightly stitched in some places and badly frayed in others.  I hope to capture a bit of the mystery of how we are held together.”

l. Seeing Eye Dragon Artist Statement

            I made this particular sculpture very tactile and I embroidered braille tags on it naming the piece, Shared Vision, and Iris, a blind goddess and her seeing-eye dragon.

            I have this dream of one day getting the story published in both type and braille with raised relief illustrations, but only time and luck and a lot of haggling would make that happen. 

 

m. Iris and The Dragon Aurora

By Joy Corcoran

Preformed at the Noon Event for Children 7/30/2011

Joy Cocoran telling a story, ASL interpreter to her left

Joy Cocoran telling a story, ASL interpreter to her left

            Long ago and far away, when there were still a few dragons flying around, there lived a young couple named Zelda and Zachariah.  Zelda was a medicine woman for her village, and Zachariah grew the plants and herbs to make the medicine.

            They were very much in love, and more than anything they wanted to have a child.  Soon enough, they were blessed with the birth of a baby girl.  She was the most amazing baby they had ever seen, with creamy skin and snowy hair.  Her eyes were clear as crystals that danced and sparkled and delighted Zelda and Zachariah.  They named their daughter Iris after the goddess of the rainbow.

Their neighbors didn’t like that baby at all.  She was strange looking.  And it was obvious she couldn’t see with those weird eyes.  That baby was blind.

There had never been a person who was blind in the village.  Everyone in the village was practically perfect.  The village itself was practically perfect.  It was nestled in a valley surrounded by fertile fields, lush forests, a clear river and majestic mountains.  The land provided everything they needed.  Everyone ate well and was healthy.  And if they got sick, the medicine woman could fix them right up.

But now that she had the strange child, they began to not trust her.  If she really knew how to make people healthy, why did she have a blind daughter?  Mayor Bighair stopped buying her hair tonic.  It made Zelda and Zachariah very sad.  They didn’t want to leave their beautiful village, but they didn’t want their daughter to grow up with people saying bad things about her.

Zelda told everyone she and Zachariah were taking the baby to visit her cousin in a village on the other side of the mountains.  They were gone for a long time.  Then one morning, the villagers smelled the aroma of good medicine coming from Zelda’s chimney and saw Zachariah tending his garden.

Mayor Bighair visited the couple and saw no signs of the baby.

“We left her with my cousin and who will love her and take care of her even though she’s different.”

“You did the right thing.  A child like that is better off with those kind of people,” Mayor Bighair said.  He bought his hair tonic and told the villagers they could once again see Zelda for their sicknesses.  Things went on like they did before.

Except Zelda and Zachariah hadn’t taken Iris away, but had made a room for her in their basement.  She slept during the day and played at night.  They were sure the day would come when the people in their village would be more understanding; until then, they would protect their precious daughter.

Iris was a happy and helpful child.  When she was old enough, her mother taught her all about herbs and how to be a medici13ne woman.  They both worked on medicines to make Iris see, but she never did.  They also worked on medicines to make the villagers kinder, but that didn’t work either.

But Iris learned how many footsteps it took to get anywhere in the house.  She was a whiz at math.  She helped her father keep the accounts and plan his most productive garden ever.

Iris and her mother made pots with images of all the different herbs carved on them so Iris could find the right herb by touching the pot.  Iris showed her mother how to arrange the mixing bowls, mortars, herbs, and utensils so everything was in easy reach.

Things went well until one day, a plague of fiery red dragons nested in the mountain forest above the village.  The villagers could hear the dragons’ terrible roars and see their hot fire breath billowing into the sky.

The villagers knew those dragons were up there scheming to burn the village and eat them.

Mayor Bighair called a meeting.  “If only they knew we are perfect people, they would find another village to devour.  Who can we send to talk to them?”

His soldiers and policemen had all fled as soon as they saw dragons fly over the village.   Everybody in the village thought they should run, too; there was no other way.  Then they heard a small sweet voice sing out, “I’ll go talk to them.  I’ll tell the dragons not to hurt us.”

A beautiful young woman with pearly skin and crystal eyes wearing a long dark cloak stepped into the crowd.  Zelda and Zachariah ran toward her.  The villagers figured out pretty quickly that this young woman was the baby Zelda and Zachariah said they sent away many years ago.

“No wonder the dragons are here!  That weird girl brought bad luck to our village!  Send her to appease the dragons.”

“I’ll be happy to go.  I am not afraid,” she said.

Her parents begged her not to, but she ignored them.  Mayor Bighair told her, “If you’re tricking us and plan to run away once you get to the forest, be warned your parents will be jailed if you don’t appease the dragons.”

“Run away?” laughed Iris.  “How could a blind girl like me do such a thing?   escort me to the edge of town and I will find them and take care of them.”

The villagers did, although they were pretty sure she wouldn’t take care of the dragons — the dragons would have her for supper.  Maybe that would give them enough time to pack their belongings and run.

As soon as Iris stepped into the forest, she felt around on the ground until she found a long stick.  She used it to find her way along the mountain path.  It was not the first time she had been there.  Often while her mother and father were asleep, she sneaked out to explore the village and the forest beyond.  She counted her steps and followed sounds and smells to find her way around.  She loved the sweet air of the forest, the rough texture of tree bark, and the co14ol touch of the leaves and grass.

Now she followed smell of sulfur and smoke and made her way to the edge of the dragons’ lair.  She took a deep breath and almost gagged it smelled so awful.  She listened to the roars and grumblings but didn’t hear as much as she expected.  She estimated it was only one dragon family – a father, a mother, and a small one.

Iris took a small cauldron out from under her cloak.  She gathered leaves and dried sticks and made a fire.  She poured water from a canteen and herbs from a small pouch into the cauldron.  Soon it was bubbling and filling the air with a sweet minty smell.

The dragons went quiet.  They sniffed the air and looked around for what was making that wonderful aroma.

“It’ll be ready soon,” a small voice said.  “I know you’re hungry, and this will make everything better.”

The dragons saw a girl hidden in the trees.  She was the most unusual looking person they’d ever seen, but whatever she was cooking smelled delicious.

Nevertheless, she was the enemy.  The dragons roared and blew fire in her direction, but the girl waved her hands and said, “Wait a minute!  If you burn me, I’ll never get it finished.”

The dragons were stunned.  People always ran when they blew fire—or attacked them with swords and spears.

“My name is Iris.  I know you’ve been suffering, and I want to make you feel better.  I don’t want you to set fire to our land, so I brought this tasty medicine.”

She scooped up a big spoonful and held it out.  “Father Dragon, would you like to try it first?”

It smelled so good, and Father Dragon was so hungry, but he bore many scars from being attacked by people.  “Don’t try to trick me.  I know you’re trying to poison us.  I should burn you up right now!”

“I am the daughter of a medicine woman; I can’t poison anything.  This will make you feel better, I promise.  Mother Dragon, will you trust me?”

15            “Trust a human?  Last time we trusted people they stole our lands and…”

Before she could finish, the little dragon flew up and slurped up the whole spoonful.

“No, Aurora, No!” the dragons roared.

“It tastes better than it smells.”  Instead of falling over from poisoning, the little dragon did a double back flip and looked healthier than she had in a long time.

Iris scooped up another spoonful and Mother Dragon lapped it up.  “Oh, this is that mint that grew in Dragonland.”

Father Dragon pulled the whole cauldron off the fire and tasted it.  “You’re right!  Aurora, come drink more!”

The dragons drank the entire cauldron and licked it clean.  The smoke stopped coming out of their mouths.  They were no longer red.  They were golden with beautiful blue wings.

“I knew it!”  Iris said.  “When I first smelled your breath I knew you had indigestion.  You should stop eating people; they’re not good for you.”

“Eat people!  Nasty!” said Aurora.

“We’re vegetarians,” said Mother Dragon.  “You don’t get this big eating people.”

“But people ran us out of our native land, and we can’t find the dragon plants we used to eat.  We have to eat anything we find in the forest.  It’s miserable.”

“It gives us gas,” said Aurora.

“I think my mother has something you can eat.  Let’s go down to the village and see her.”

“We’ll clean up first.”  The dragons flew off to a mountain river that lay a few wing-flaps away.  When she noticed Iris hadn’t followed them, Aurora came back.  “Why aren’t you coming with us?”

“I don’t know the way, and I couldn’t see which way you went.  I’ve never been to the river.”

“I’ll take you there,” Aurora said, and she let Iris hold on to her wing and walked with her to the river.  Iris was afraid to get in the water, but the little dragon splashed and played with her until they were both good and clean.

The dragons flew Iris back to the village, but nobody was there.  “They must be hiding,” Iris said.  “They’re afraid of you.”  She called out, “It’s okay! They don’t eat people.”  Nobody came out.

Iris took them to her house.  Only Aurora was small enough to follow her through the door.  Iris’s parents trembled in the kitchen.  Zelda hugged Iris, and Zachariah tried to chase Aurora out.

“Don’t be afraid.  This is my new friend, Aurora.  We need some dragon flower.”

“Dragon flower?” her mother asked.

“You know,” Iris said.  She felt along the back rows of the shelves and found the pot with the dragon carved on it.  “This one.”

“I haven’t thought of that in years.  We used to prescribe it for nightmares, but there’s almost no call for it anymore.  Your father has lots of seeds, if I remember well.  We used the flowers, they’re huge, but if you let the fruits grow they get as big as a house.”

Zelda went out to talk to the dragons and fed them a bit of the dragon flower.  Off in the distance they saw some people watching.  “It’s okay,” Zelda said.  “Our Iris has tamed the dragons.”

Mayor Bighair stepped out of the crowd.  “Tamed the dragons?  She’s a witch.  Anyone who consorts with dragons must be a witch.  Her mother’s been a witch all along and has had us under her spell.  We’ll all be dragon food if we don’t leave this town right now and enlist another village in fighting this scourge of ….”

He talked on and on.  Iris whispered something in Aurora’s ear and Aurora flew up and snatched at his hair which came off in one grab.  It was a wig!  Mayor Bighair’s face and bald head turned bright red, and he ran out of the city and was never seen again.  A few other villagers left, too, but most stayed and found out their village was even more perfect than before.  If they had dragons in the village, they knew they would always be safe.

Zachariah planted a big field of dragon fruit so the dragons always had plenty to eat.

Iris never had to hide again.  Anywhere she wanted to go, all she had to do was call for Aurora and she would be her guide.

Sometimes Aurora would fly Iris to strange new lands.  And if ever people they met were afraid, they would show them that a dragon is not such a scary thing, once you see it clearly.

16

Section 3: Chapter 4 Checklist

  • The work in question is a work of high art.
  • The work seeks to represent impairment or disability as described in Chapter 2 and this work does not take disability only as a point of inspiration but wants to put it on public view.
  • The work may have a disability aesthetic as in Chapter 3.
  • The work could be said to have a disability cultural influence.
  • The work makes a disability pride statement such as addressing the injustices that PWD endure and calls for change. Therefore it is truly persuasive as in:

a. Political (partisan) statements could be present

b. Through logical argument or pleas to the emotions.

c. It may force the issues as if to protest.

  • If there are any disability artifact elements present in the work, they rely on cultural ideas of disability to make the work understood. For example, these artifacts could include: ASL, Braille, canes (of any sort), medical devises, speech tools and wheelchairs.

[i]             Albrecht, Gary L. “Disability Culture.” Encyclopedia of Disability. Thousand Oaks, Calif: Sage Publications. 2006. The entry I cite here is of a draft dated May 8 (year unknown) which was published in this encyclopedia under the title “Disability Culture” written jointly by Petra Kuppers and Melanie Wakefield. As I cite this work I will be noting the page numbers of the May 8th manuscript.

[ii]             Siebers, Tobin. “Disability Art and Vandalism,” Disability Aesthetics. Ann Arbor: University of Michigan Press. 2010. 80.

[iii]             Siebers. 81.

[iv]             NFB, “RESOLUTION 93-01,” https://nfb.org/images/nfb/publications/convent/resol93.htm, (accessed June 25, 2013).

[v] Albrecht. 1.

[vi] Albrecht. 13-14.

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