WEAD, Women Eco Artists Dialog, is a nonprofit focusing on women’s unique perspectives and contributions in the eco and social justice art fields. Our global constituency numbers 400+/- activist feminist art workers (inclusive reading of “art, feminism, woman, genderâ€). WEAD’s issue takeover — Q30: “LAMENTATION†unearths GRIEF found in members’ art and words. Facing oppressive loss of critical ecosystems, where is hope?
When words and sounds fail, silence has the potential to both open up space for listening, and serve as an oppressive force. This issue will examine Silence in various practices and processes, as both a facilitator of healing and a catalyst for trauma. Artists are silent, question silence, are empowered through and threatened by silence, listen in silence, stew in silence. This issue is a quiet one, but it is by no means without agency.
Guest Edited by Feresteh Toosi. Animating Ancestors is a special themed issue of the Center for Sustainable Practice in the Arts Quarterly journal which features projects that breathe life into the past. The word “animate†comes from the Latin verb animare meaning “giving life to.†Ancestors are all the plants, animals, people, fungi, soil, water, that constitute our lineage on this planet. This issue includes contributors who bring these inherited realities alive for their audiences through their creative research.
Lead Editor’s note: We will be publishing excerpts from Q18: dis/sustain/ability, guest edited by Bronwyn Preece, in order to make the content accessible to blind readers with audio screen readers. We’ll also be including audio descriptions of the Quarterly’s original layout designed by Stephanie Plenner. Please stay tuned for future posts and share widely. In this chapter, Chun-Shan (Sandie) Yi describes the process for the work “Skinny.”
Making art about Crip bodies has always been an urge to not only explore the meanings of our existence — and the social relationships with others — but also as a deliberate choice for constructing visual and tactile languages to document disability as a cultural phenomenon and familial history.
Rahnee (named used with permission) and I are sisters, not by blood, but by our connections to disability. Our contractured fingers and toes, and our Asian blood, made us sisters. Rahnee is half Thai and half white; I am a Taiwanese. Rahnee has psoriasis and I was born with two fingers and toes.
As a personal assistant, I help Rahnee with personal hygiene, including showering, applying lotions, massaging her skin and dressing. Sometimes I use my finger tips to peel off the excessive skin to relieve Rahnee from her swollen and inflamed skin. I would feel the body fluid rushing out of her skin between my nails and finger tips, then I would massage her skin with a thick layer of lotion. We often talk throughout this process as peer support time: sometimes we laugh, sometimes we cry, and sometimes we are just exhausted together.
It always felt like I was making sculptural art with Rahnee’s body: our conversations — languaged through strokes of hand — became a part of the stories woven and shared by each other. At the end of each “hygiene-care art†sessions, I would sweep the skin flakes off the bed sheet and on the floor, and form mounds of them before tossing to the bin.
Most of us have taught to see disability as something negative, debilitating, weak, incapable or vulnerable. it is something that people try to get rid of. Peeling and tossing away Rahnee’s skin are actions of relieving her from pain and itch, but are they also metaphors of getting rid of her disability? What does it mean to remove traces of her disabled body? If her skin flakes were evidence of her existence, what does it say about the gesture of throwing piece of her away?
While I contemplated on the questions above, I decided to turn to sewing and made pods to hold pieces of Rahnee’s skin. Disability shapes the way we interact with one another, it reformulates the way people relate and access to another human being which otherwise is absent in the non-disabled world. As a Crip artist of color, having disability and providing care to and making art about another disabled sister is about creating intimacy and Crip sisterhood. Most importantly, it is about preserving and sustaining the existence of my own kind.
Title: “Skinnyâ€
Artist: Chun-Shan (Sandie) Yi
Material: Human skin flakes, silk organza, sewing thread, embroidery thread and lotion.
Date: 2014 ~ On-going
Photos by Cheng-Chang Kuo
Chun-Shan (Sandie) Yi makes small-scale body adornments
exploring the meanings of disabled women’s bodies by remapping the narratives of skin, scars, and medical and surgical interventions on the disabled bodies. Her work examines the potential of art to address the relationship between the body and social standards pertaining to beauty and disability. Her latest project focuses on body reconfiguration through delineating memories of medical and surgical Unexpected Anatomies intervention. Yi received a BFA, and MA in art therapy from the School of the Art Institute of Chicago and an MFA from the University of California Berkeley. Currently, she is a PhD candidate in Disability Studies at the University of Illinois at Chicago. Her research interests include, Disability Art and Culture, social justice based art therapy, museum studies and disability fashion.
Lead Editor’s note: We will be publishing excerpts from Q18: dis/sustain/ability, guest edited by Bronwyn Preece, in order to make the content accessible to blind readers with audio screen readers. We’ll also be including audio descriptions of the Quarterly’s original layout designed by Stephanie Plenner. Please stay tuned for future posts and share widely. In this chapter, Susanna Uchatius discusses an “othered” performance by Theatre Terrific.
BEING ANIMAL:
Produced and performed by Theatre Terrific September 2015
By Susanna Uchatius
During the longest West Coast drought in recorded history, Theatre Terrific gathered an inclusive cast and crew to explore our place in the natural world. Inspired by philosopher and cultural ecologist David Abram, we journeyed into a conversation with nature. Abram observes, “Humans are tuned for relationship. The eyes, the skin, the tongue, ears and nostril – all are gates where our body receives the nourishment of otherness.†(1)
We asked ourselves the question:
What would happen if we fully embraced otherness in ourselves, in our communities, and in nature?
The result was Theatre Terrific’s production of BEING ANIMAL (2) , performed in Sculpture Park on Granville Island as part of the 2015 Vancouver Fringe Festival.
A cast of 12 actors, often labeled as “other†due to cognitive, physical, mental health, gender and/or cultural differences from the normative, took up the challenge and collaborated in a bold exploration that tested the truth of our relationship with our natural surroundings.
Do we speak the language of water, of wind, of tree, of bird?
The collaborative ensemble consisted of the physicality, language and perceptions of artists, some of whose life experience includes autism, cerebral palsy, brain damage, schizophrenia, Down syndrome, gender uniqueness, and the cultural experience of the Indigenous, Chinese, Filipino, Irish to name a few.
BEING ANIMAL became a musical moving conversation. The work incorporated the park environment such as the trees, grass, confined water, large stone, sky, air — as partners in performance. Using song, dance, music, mask and puppetry, BEING ANIMAL, explored how to truthfully “live†in our world, share thoughts with the environment around us and ultimately find commonality and companionship with the natural world.
How did we do this?
By embracing the gifts of diversity offered up by cast and place.
How to speak with a tree. An actor chooses an audience member to pick a tree and then guides them through a speed date…. The awareness of the tiniest detail as one attempted to impress a tree made for astute and profound conversation.
The life cycle of nature. An actor crawls out of his wheelchair and furiously claws at the earth to get closer to the beloved family members he has lost. Behind him three actors gesture the dance of love, death and ultimate rebirth…an enactment of the continuum that is the natural life cycle.
Value all things. The simple gesture of a cast member gently picking up a stone or a leaf, examining it and then with great respect, giving it as a valuable gift to an audience member endowed the simple object with reverence ….
again and again and again….
BEING ANIMAL closes with a large Mother Earth puppet who slowly appears, and with outspread arms, embraces the cast: guiding them to walk to the water’s edge to raise their arms in praise to the open sky, ocean, trees and wonder of it all.
Theatre Terrific:
MISSION: Theatre Terrific pioneers inclusive opportunities for artists of all abilities to develop performance skills and collaborate in the production of theatrical works.
MANDATE: Through its work, Theatre Terrific challenges audiences to be open to the impact of thought-provoking art.
Susanna Uchatius has been the Artistic Director of Theatre Terrific, Western Canada’s longest running inclusive theatre company for artists of all abilities in Vancouver, since 2005. She has written, directed and collaboratively developed over 30 professional, community and site-specific productions. She has pioneered a rigorous and respected accessible ensemble process, that includes Equity and emerging actors of all abilities in the creation of high quality productions tackling universal issues relevant to the human condition.
Photos by Chantele Fry
FOOTNOTES
1. Abram, David. The Spell of the Sensuous : Perception and Language in a More-than-Human World. New York : Pantheon Books, 1996. Page ix.
2. A direct reference to Abram’s 2010 book of the same name.
An opening up of and gathering of discourse around the concept of legibility. Who and what can be read and defined? And how easily? What should be made visible and accessible, determinate, and what should remain in the registers of ambiguity and contingent understanding?
Reaching for Jack Halberstam’s use of the term legibility in “The Queer Art of Failure,†and placing it next to technology and the rendering of the climate as legible to better predict and understand its behavior, bodies and genders resist the legibility of being easily defined and determinate to governing bodies and power, while we are scrambling for more clear legibility of our environments, positioning the body in contention with the atmosphere it’s amidst. Contributions to the journal will be suspended between these two ideas, questioning the foundations on which we perceive the legible, and who it benefits. ISSUE TAKEOVER by Calvin Rocchio.
Lead Editor’s note: We will be publishing excerpts from Q18: dis/sustain/ability, guest edited by Bronwyn Preece, in order to make the content accessible to blind readers with audio screen readers. We’ll also be including audio descriptions of the Quarterly’s original layout designed by Stephanie Plenner, described by Katie Murphy. Please stay tuned for future posts and share widely.
In this our fifth chapter, Neil Marcus shares thoughts on disability, theater, hope and embedment.
CREATIVITY, SUSTAINABILITY, DISABILITi
Neil Marcus
“You don’t have to quote me unless I say something relevant. I am just myself.â€
–Manfred Warmuth
Photograph from a talk on “Disability Culture†by Petra Kuppers: “The Olimpias†Art Collective at Portland Art Festival, May 2008
RETHINKING SHAKESPEARE:
IS YOURS THE STUFF THAT DREAMS ARE MADE OF II?
my thoughts on theater and disability
its about making sense of chaos.
its about making the spirit visible.
its about discovering all the connections and linkages that make us
human together and describing them.
disability as having a meaning in disability, has no meaning.
“it doesn’t rain disability.”
SELF SUSTENANCE
…in a Godzilla world in the location of Manhattan…Godzilla roams the city streets with huge car sized footsteps. Car alarms go off constantly. Godzilla is upset by the ruckus.
wheeee yuhhh wheeee beeep beep!! A big nuisance. irritant…bother.
in a Godzilla world, everything topples around her. towers, freeways, stores, trees. and Godzilla spits fire. ssss…
THOUGHTS OF POETIC EMBEDMENT
Hello dear friend of the petrified wasp-in-pine sap:
I heard of your search for documents or documentability.
I search for the same. Striving for clarity and new forms of expressions in my own ‘disability’ [bad word] related prose poetry/theater of life.
Personally, I like the words hypertext, subtext, metaphor link and offshoot:
where words and ideas constantly embark on spin off words and ideas and
movement shakes and dances out of every crevice of thought.
I often work off graphic images. A sign reading ACCESS TO PLANETARIUM
with appropriate stick wheelchair figure mid sentence prompts my bodythinking.
Hence pictures take us to words, ideas to explore.
“Department of English, University of Michigan†Photo by Neil Marcus
WHAT GIVES YOU HOPE?
Email exchange:
Neil Marcus66<!– (10:46:23 AM)–>: doing art……living artistically I think helps me …………………it gives me good direction
Neil Marcus66<!– (10:48:29 AM)–>: I as always fascinated by movies about prisons. how people cope?
Ester — (10:49:04 AM)–>: With?
Neil Marcus66<!– (10:51:01 AM)–>: difficult situations.. another favorite topic…………..marooned…………..
Ester– (10:52:36 AM)–>: Themes of isolation? Separateness?
Neil Marcus66<!– (10:54:22 AM)–>: yes definitely and discovering tremendous resources………….
Picture = 1000 words
Idea = staff of life
Poem = 1000 ideas
Art on the walls. Art in the trees. Art in the gaze. Art in the clay.
Art in the flesh. Art in the move. Art in the stroke.
I am doing my criptography (the painting of brush stroke simple figures that in my mind are all representations of disabled people moving) the view of the view of the view of the view of the view:
SELF SUSTAINING ACTS
to insinuate oneself onto
to insert ones self
into public discourse/sphere
appropriate popular culture
with culinary delights
sandwiches made with garden fresh tomatoes peanut butter
and homemade jam
To be spastic
to be proud
To boldly go where …
you want to go in this intrepid universe
with great enterprise
NORMALIZING RELATIONS
I found this road sign on the campus of the National University of Australia outside of the Chefly Library. It was lovely to run into. As far as I know, it is a one-of-a-kind artwork and/or perhaps a ‘public work of art,’ as Australia is famous for government-funded art in public spaces.
I have never seen the universal access sign in this format.
I imagine someone had walked by it one day and saw the need to humanize it a little. This was truly a revolutionary act to me. With a flower, no less.
Thoughts about the importance of road signs and getting the message right.
Art Full.
The flower presented here really undermines the static purely ‘functional’ representation of disability.
“I’ve seen things you people wouldn’t believe. Attack ships on fire off the shoulder of Orion. I watched C-beams glitter in the dark near the Tannhäuser Gate. All those moments will be lost in time, like tears in the rain. Time to die.â€
–Replicant Roy Batty (Rutger Hauer) in Blade Runner
RE-MINDS
We don’t always remember how glorious it is to be human…what we live
through and how we come out. It is hard to speak of such experiences
but we all do have them.
I quote Blade Runner above because I think the android’s view of life
is well articulated. I look to the outsider for commentaries on the
human life. Aliens androids prisoners: the disenfranchised.
Humans often can feel our own lives and struggles outside our numbness
if given a bit of distance/perspective. All of us have exceptional
things to express. Moments that have touched us deeply. I see access
to these memories as being our only limit.
Do we believe we are artists and philosophers?
Do our lives have meaning?
Do we have something to say?
METEORIC
‘Meteoric’ Neil Marcus, Sketch from Superfest Film Festival SPSU, 2016Â
EXAMPLE OF RELEVANCE
After the evening show, we have the Q and A with the audience and in front of 200 people, a woman asks me: “What kind of woman do you like, I mean you say you are a lover and all. I was just wondering?†I fumble A LOT and say “friendly ones†then “next question please.†Matt makes a joke saying, “what’s your phone number?†He continues, “You have such perfect timing Neil and such control. Is there anything you can tell others to help them?†I answer, “Well…to appreciate ones body no matter what it does or doesn’t do, helps.â€
During the night and the next day, I think about that first question. I think about who I am, the position I’m in and what I’m doing. Part of it is FEEDBACK. It’s sustenance. I’ve created a situation. Me performing audience. Inspired dialogue. It’s a situation where no matter what I think, act or do, I cannot fail. It’s failsafe. Because I’m always out there doing my best. WOW. And I usually always get applause. What does this tell me? I’m telling you this because I think it is to be a model of physical therapy. Emotional therapy. Self help.
A dancer’s foot. My foot.
In an oral history interview of artists with disabilities, using the technology of ‘instant messaging’ I was able to articulate:
“Medusa†by Neil Marcus. Touch pad art. 2012
Neil Marcus66<!– (11:00:58 AM)–>: I’m a human bridge in a moment of time spanning as far and as relevant as my thoughts will carry me
Esther – (11:04:58 AM)–>: I’m a human bridge in a moment of time, spanning as far and as relevant as my thoughts will carry me.
MY AUTO CORRECT ON “DISABILITY :
“disability/ disabled”: an un quantifiable concept, immeasurable, non-poetic, medicalized word that represents no thing or no body EXCEPT as a idea in need of revolution.
The concept of “Disability” is non sustainable.
love joy art …sustainable self renewing
I listen to the waves at the seashore and watch them roll in. in and out. They never stop.
My mind wanders. I think of love. I smell the sea life air. I think of grains of sand slipping through my wet toes. I think of starry nights and streaming comets and glowing rounded moons. I think of thousands of fishes that will run with the tides at a certain season and time each year.
There are moments in my life when everything is so completely and totally understandable, all I can do is gasp in wonder and cry a special brand of joyous tear and try to tell someone all about it.
There is a postcard that I TREASURE. I found it in a postcard store in 1984. It totally says a lot of what I want to say. Maybe it says everything! !
the card stock is braille with braille dots as the postcard “scene†thats raised little “bumpsâ€on a white background. The effect is that you are sending this postcard to someone and its so complete that at first glance…it seems like nothing is there. To a sighted person, the card seems blank. It’s all white.
Turn it over. In very small print it says ,
â€I often imagine myself being here. Sitting on the beach, listening to the waves, feeling the salty air upon my face and tongue. Everything seems possible. i wish you were hereâ€
so.. it’s not blank. The front is the poem translated into braille. Touch. speaks a language that is very real but is little known. What could be more communicative than a fingers touch.
And the artistic statement is so strong. my words don’t do it justice.
Biography
Neil Marcus is a Spastic artist and performer living in Berkeley, California, USA. His books include Special Effects: Advances in Neurology (2011), and Cripple Poetics: A Love Story (2010), and The Princess and the Dragon (a disabled fable) (unpublished). His most performed play is Storm Reading (1988).
Major Influences:
100 million miracles [flower drum song] Dir. Gene Kelley
easy rider
the mothers of invention
re evaluation counseling
love revolution
Cyrano de Bergerac
performance art
storytelling
calligraphy
sprouting
poetry/rhythm
human liberation
dance
body as art
disable/d liberation
touch
idea … weaving
At age 13 I began learning co-counseling. Theories of liberation and oppression. This enriched my thinking. My world. I could live. I could give. I could love. I had a brush with which to touch-up the world. Ideas popping. I was radicalized. I had a vibrant self. I had expression. I had raves.
Filming: “disability/disabled countryâ€
Smithsonian video by Neil Marcus/filmed and edited by Jai Jai Noire,
National Museum of American History, 1987/2014
Photo by Gary Ivanek
Lead Editor’s note: We will be publishing excerpts from Q18: dis/sustain/ability, guest edited by Bronwyn Preece, in order to make the content accessible to blind readers with audio screen readers. We’ll also be including audio descriptions of the Quarterly’s original layout designed by Stephanie Plenner, described by Katie Murphy. Please stay tuned for future posts and share widely.
In this our fourth chapter, Dee Heddon and Sue Porter discuss the reframing of walking practices for wheelchair-bound participants, along with ideas of interdependency.
CONNECTIONS
It is the summer of 2012 and Dee is walking across Belgium with The Walking Library, a library filled with books considered good to take for a walk and carried on foot. The Walking Library is an artwork created for Sideways festival, a month- long peripatetic festival aiming to renew attention to the ‘slow paths’ – the underused and thus endangered network of footpaths crossing the country – by walking some 334 km along them. 1
In a tent in a field somewhere in the Flanders region Dee’s phone accesses wifi and emails are downloaded. One of them is from Alison Parfitt, a collaborator with Dee in a 2010 research network which explored site-specific performances’ relationship with environmental change. Alison introduces Dee to her friend and colleague, Dr. Sue Porter, a researcher at the University of Bristol. Sue is in the process of putting together an interdisciplinary research grant application for a project which would explore disabled people’s everyday experiences of landscape and environment to surface everyday wisdoms and expertise. Sue’s interest in using walking as a research method had prompted Alison to connect then, given Dee’s enduring interest in walking art. 2 From the tent in the field in Belgium, battling the erratic internet connection, Dee sends Sue an email, signalling her enthusiasm.
WALKING
In 2014, the project Walking Interconnections: Researching the Lived Experience of Disabled People for a Sustainable Society was launched. Walking Interconnections, led by Sue Porter, was a year-long interdisciplinary study that responded to the demonstrable lack of connection between disability and environmental movements. More pointedly, it was motivated by the marginalization of disabled people within and by environmentalist discourse, which most often presumes, figures and reiterates a normative, undifferentiated and able-bodied subject, revealing what Sarah Jacquette Ray identifies as a “corporeal unconsciousâ€. The ‘environmental subject’ is one who is independent, self-sufficient, fit and healthy. 3 Walking Interconnections took walking as its primary methodology in part because it is immersive and fosters convivial exchanges, 4 but more importantly because placing walking at the centre challenged a corporeal unconscious which figured the ‘walking’ body as a body walking upright on two feet. As one of our co-researchers, Liz Crow – a wheelchair user – commented on the Walking Interconnections blog in June 2013, she bit her ‘tongue at the word walking (because I’m not, am I?)’. Notably, six months further into the project, Crow’s use of the word walking, though still hesitant, indicates an importantly expanded signification:
Speaking personally, so many years of medical history have been of
doctors telling me I should walk – that is, functionally, place one foot in
front of the other in order to move from one point to another. In almost 30 years of using a wheelchair, I’ve never yet seen a doctor who understood that that’s not what walking ever represented to me. It was moving through space, connecting with natural and social environments, relationships, meditation, relaxation, pleasure, mental health, tactility, and more. Those are the really important features of walking and it remains all of those things when I ‘walk’ with wheels. 5
Walking Interconnections emerged from an earlier scoping essay by Porter and her academic colleague David Abbott. 6 In this, the authors asked whether physically disabled peoples’ experiences might enable them to become valuable contributors to planning initiatives directed towards environmental hazard, rather than marginalized by the dominant perception of disabled people as singularly vulnerable. The authors didn’t deny that disabled people were vulnerable – that is, ‘disproportionately affected by the consequences of all kinds of natural and human made hazards’ 7 – but their contention was that such vulnerability is a product of neglect (for example, structural attitudes position disabled people as the least worth saving) and also by design (the needs – and skills – of disabled people are not fully acknowledged – for example, planning responses are often ablest in their assumptions, privileging normative notions of bodily abilities).
Seeking to problematize the perception of vulnerability, Abbott & Porter
proposed an alternative hypothesis, one paying attention to disabled people’s ‘intricate, daily negotiations with risk, hazard and barriers’. 8 As they argue, ‘disabled people may have lived experiences which bestow expertise which could significantly contribute to discussions about and planning for environmental risk’. 9 Walking Interconnections aimed to identify such expertise in order that it could be recognized and valued and could contribute to wider discussions around sustainability.
Over the course of a year, a research team worked with 19 co-researchers
from Bristol who self-identified as either physically disabled or environmental activist – tellingly, only one co-researcher self-identified as both. Each co-researcher was asked to invite another co-researcher to accompany them on a walk of their choice. Walking pairs were often also accompanied by Personal Assistants and/or assistance dogs. A variety of walking aids were used, from a trike, to scooters and sticks. Each walking pair carried a digital voice recorder. More than 20 hours of audio material, mostly recorded on the move, was transcribed and edited and re-recorded into a 30-minute verbatim audio play-reading, ‘Going for a Walk’. This can be downloaded from the project’s website; here, I offer just a few extracts taken from across different scenes. 10
SCENE 2: PLANNING
Jane: Have you got a walk in mind?
Hayley: Yes, Baydock Woods. There’s quite a few little walks round there, but there is one on the level up round the top, which you can basically just go round in a circle.
Neil: I was thinking about walking round my allotment site.
Hayley: Are there places to sit?
Neil: Good question. Not readily, no, there are not.
Jane: Has it got a path?
Neil: Yes, there’s a path.
Jane: Tarmacked?
Neil: Not tarmacked, ehm, a combination of sort of hard sort of gravel and grass.
Hayley: And level?
Neil: There’s a very slight incline, as you go up, but nothing.
Hayley: Nothing major. Neil: Yeah, pretty much level.
Sue: Well what you find with disabled people is that they have to plan very
meticulously if they don’t want to get caught out. This is why I chose this
walk today. We came and reccied it after our meeting and made sure I
could see where I could get on.
Sharon: So from the bridge if you go up the hill it takes you somewhere else. But it’s a bit steep and I don’t think the buggy will manage it very well, and it’s a bit rockety so I don’t think we will go up there.
Tony: There’s this bridge, that’s a footbridge, so these are all footpaths, these purple colored things on the map, so we could maybe investigate that?
Sue: As long as we’ve got some options in case it doesn’t work.
SCENE 4: MAKING CHOICES
Julie: The reason I’ve chosen this walk today is, one, they’ve got good facilities. Obviously you’ve got the café, and the toilets for disabled which you can access them with a radar key, most of the footpaths are quite level, and obviously it’s good for Billie to run around and there’s various walks to do with Blaise Castle. I’ve chosen this walk because we can go, almost complete it.
Dale: I like walking around the dock area. It’s a big, wide open space and there’s lots of different things to look at, like boats, and ships and the harbor side. And for me it expresses the freedom of walking. Because you don’t get a lot of traffic down there, it’s much easier and accessible for people like myself.
Sharon: I chose this one because I’d been there before. It’s quite a nice walk. It’s not too far, and they have loads of lovely trees and there’s always people in there walking their dogs and it’s just very peaceful in there.
Sue: I think I chose it because I knew it was flat. And you’ve chosen it to
accommodate me, really.
Tony: Partly, but I just like somewhere near water. I think anywhere near water I quite like.
SCENE 6: THE STEPS GOT US
Glenise: Ah, there’s steps up here. […]
Julie: Sometimes, people take things for granted. All the walks here aren’t fully accessible.
Anais: Clearly you wouldn’t go through there?
Julie: You wouldn’t, because of the dip. […] We couldn’t go up to the mill. That’s one of the things that we couldn’t access. There’s going to be other things.
Anais: For example, going to the path on the left, which is too steep.
Julie: Yes, too steep.
Liz: Ok, so we’ve come past the nature reserve and got onto a track that we were both getting really quite enthusiastic about, it’s one of those very sustainable tracks, tramped down earth and my trike has coped just about with the loose gravel surface on it. And beyond this gate we’ve come to what looks lovely, real potential for open countryside but we’ve come to one of those kissing gates which is impassable. I would probably
get stuck in and left there because I think I would get wedged. And
there’s a lovely big gate next to it – but unfortunately that’s padlocked – so
that’s the end of this route. So – now we are going to backtrack.
SUSTAINING INTERDEPENDENCY
Key aspects of the transformation towards sustainability are the abilities to cope with and adapt to new challenges arising from changing environments. 11 Going for a Walk reveals repeated practices of planning, mitigation, risk taking, deviation, adaptability, problem solving, persistence, commitment, attentiveness and creativity and interdependency. The dominant discourse of ‘independence’, particularly as this is attached to the field of disability policy and practices, belies the reality and necessity of interdependence – interdependence offering alternative and useful conceptions of ‘sustainable living’. Repeatedly observed in our project were interdependencies’ attendant practices, including trust, negotiation, collaboration, reciprocity, mutuality, and co-operation. The inter, we suggest, is surely part of an environmental ethic, contesting as it does the story of the subject as self-sufficient and singular. Whilst interdependency is perhaps more apparent because more explicit in the relationships of (some) disabled people (some of the time), Judith Butler has insisted that as ‘socially constituted bodies’, ‘we are fundamentally dependent on others’. 12 Vulnerability and interdependency are two sides of the same ontological coin, far removed from the idea of the ‘masterful’, omnipotent subject. Borrowing from Butler again, greater recognition of our ‘inevitable interdependency’ might very well provide the sustaining grounds for what she calls a ‘global political community’. 13 Such sustaining grounds are surely the foundations for sustainability? Acknowledging our vulnerability might just allow all of us to practice our interdependency better, a process of resilience necessary to sustaining a diversity of assembled lives, human ones included.
POST-SCRIPT
Dr. Sue Porter died suddenly on 11 January 2017. Nevertheless, this piece of
writing is interdependent, the product of conjoined labor, written and rewritten as a collaborative act. The ‘I’ is a ‘we’. I last saw Sue in July 2016. She gifted me a book for The Walking Library for Women Walking. The book was Examined Life: Excursions with Contemporary Thinkers. 14 Sue wrote:
The reason I chose the Examined Life book was particularly for the
chapter that is the walk Sunaura Taylor and Judith Butler take in San
Francisco – where we hear what makes a city inclusive and therefore
accessible, in city planning terms and, more importantly for me, the
exchange between these walkers on the ideas of ‘what a body does’. They speak to me of the importance of ‘belonging’ and the value of asking again and again, ‘who is it that belongs here?’ I also love hearing the relationship that evolves between them, the gaze, the touching, the making of a shared pace.
Dee Heddon holds the James Arnott Chair in Drama at the University of
Glasgow. She is the author of numerous books, essays and articles, many of
which engage with walking as an aesthetic practice.
Sue Porter was a Senior Research Fellow in the School of Policy Studies,
University of Bristol. Sue wrote widely about disability, justice and equality. She lived her life as a scholar, an activist and an artist.
FOOTNOTES
Lead Editor’s note: We will be publishing excerpts from Q18: dis/sustain/ability, guest edited by Bronwyn Preece, in order to make the content accessible to blind readers with audio screen readers. We’ll also be including audio descriptions of the Quarterly’s original layout designed by Stephanie Plenner, described by Katie Murphy. Please stay tuned for future posts and share widely.
In this our third chapter, the CSPA reports on the DISART SYMPOSIUM, a gathering of thinkers and makers discussion access and the arts In Grand Rapids, Michigan in 2017.
The Dis Arts Festival & Symposium was held April 6-8, 2017, in Grand Rapids, Michigan. The event combined performances and an exhibition with a 3-day symposium, gathering a broad spectrum of artists who create from a disabled perspective, or who engage with concepts of disability.
Keynote speakers included Riva Lehrer, an artist, writer and curator– known for her complex portraits, which were featured in an accompanying exhibition—and Sara Hendren, an artist, design researcher, and professor based in Cambridge, Massachusetts. Each day of the event was framed with a theme: Identity, Design and Community. The Quarterly was able to attend April 7th, “Design,†and witness other talks via the event’s live stream.
Sara Hendren spoke about her individual design work, as well as her work with the adaptation + ability group at Olin College. That groups’ work begins with an assertion, “We presume competence. This exhortation is a central one in disability rights circles, and we proceed with it in mind as we work with our design partners. We don’t claim our end-users are ‘suffering from’ their conditions—unless they tell us they are. We speak directly to users themselves, not to caregivers or companions—unless we’re directed to do so. We speak the way we’d speak to anyone, even if our partners don’t use verbal language in return—until they request we do otherwise.†The resulting works included engineering for eating utensils, ramps with kinetic lights, and an acoustic mobility device. Hendren’s individual work involves explorations of ramps and their cultural presence, among many other things.
Beth Bienvenue, the director of the Office of Accessibility at the National Endowment for the Arts, discussed that organizations’ recent efforts to support disabled artists and projects pushing ideas of accessibility. Artist Benedict Phillips discussed growing up dyslexic and the tremendous impact it had on his worldview, leading him to create hilarious works like “The Div,†(“It is berleevd that some were between 90% and 95% of the populasion of the UK are Lecksick. These people fined it hard to spell in interesting ways and are genraly exskloodid from dislecksick culcher.â€)
The space of the DisArts symposium was carefully considered according to a variety of needs. In the main hall, sign language interpreters translated all the speakers, who were also broadcast via a closed-captioned live feed. Visitors could watch the live feed from a lobby with couches and fidget spinners—for families and other folks who have a hard time being quiet or sitting still—or from a deliberately quiet corner that looked onto the stage from a window. Snacks and hot drinks were available throughout the day. The result was a cozy, welcoming, multifaceted space, less intimidating—but no less rigorous—than the average conference setting.
Friday evening’s symposium concluded with performances by Kris Lenzo and performance legend Terry Galloway, known for her performance work “Tough†and her book “Mean Little Deaf Queer.â€
DisArt began as a collaboration with Kendall College of Art and Design of Ferris State University (KCAD) and Urban Institute for Contemporary Arts (UICA) in the spring of 2014, and is now a 501(c)(3) organization. In presenting its symposium and festival, and offering consulting on disability access, the organization promotes a social model of disability, which “looks at cultural environments (physical and social) as the main sources of disabling practices. . . people are disabled by the cultural stereotypes and misconceptions heaved on to them by nondisabled standards of health and wellness; they are disabled by attitudinal and architectural barriers.â€
Photo credit: Eric Bouwens Photography
Lead Editor’s note: We will be publishing excerpts from Q18: dis/sustain/ability, in order to make the content accessible to blind readers with audio screen readers. We’ll also be including audio descriptions of the Quarterly’s original layout designed by Stephanie Plenner, described by Katie Murphy. Please stay tuned for future posts and share widely.
In this our second chapter, Jennifer Natalya Fink and Julie Laffin creatively explore chemical sensitivity and disability in The Remote Everyday.
Normal Flower
Eden
There are days you want normal. You know it’s a fiction, a lie, a cheat. You don’t care. You want that high. The odorless rose, the deathless life. Aren’t we all a little addicted. Don’t you just want a normal child, you whisper. One without any issues. Just like you, right? Oh my parsnip, my pear. You have no ‘issues’, no needs? Ah! So you’re dead. (See Rule #9.)
And remember: I don’t love you.
Begin by shopping carefully. The potential for cross contamination, second-hand or third-hand residue is very high.
The similarity between cologne and pesticide is remarkable. Once you acquire a highly deranged sense of smell, there is a terrible sameness to it all.
Most failures occur during prep because of the high rate of contamination from having to prep in one’s not so clean living space or car.
Take everything out of your bedroom including all the furniture and mattresses.
Begin washing all your bedding and clothing in sanctioned laundry soap months in advance of a visit.
Rip out all carpet and remove draperies.
Don’t enter the house without a respirator for several days until all the volatized substances have been cleared out.
Re-introduce your personal things into the space your body most frequently inhabits– your chemical-free safe room, your oasis.
Make sure there is no pesticide application happening inside your living space or that there has not been for at least several years. Also, make sure herbicides are not being used outside your door.
And though you have gone through numerous, time-consuming and mind-boggling tasks, it will all seem pointless once you put on my clothing. No so! All the preparation has made the chances of my tolerating your presence in my living space in the realm of the possible. Once you have detoxed yourself and then put on my things, then and only then, is there is a snowball’s chance it hell that it will actually work out.
Assholes and Their Mothers (Genetics)
Early on, maybe two months after N’s diagnosis, a friend with a neurotypical brat, I mean kid, called me. She was High WASP, an erstwhile academic who was generously donating her Harvard-educated brain to the PTA. The helicopter of all helicopters. She took her daughter to the ER for a single sneeze. She was one of the first people I told about The Diagnosis. Two days later, she called me: “Do you know of any kids’ theater groups that do a sensory-friendly version of their show? But it has to be free, because there are only two kids with autism, and why should we pay for just those two?†My head exploded. Steam tunneled out of my ears. I was in a comic book. Correction: I was a comic book. Finally, someone to dump my rage upon. You, my friend, are actually less accommodating than the Americans with Disabilities Act. A plain wool Republican coat of a law. So basic even a Bush could buy it. Every child is entitled to an equal education. Every. Child. You’re in violation of the LAW, do you get that? You’re under arrest.
I said none of that. I said I didn’t know of any theater that would perform for free etc. I got off the phone and punched in a wall. That was the last conversation I ever had with her. I never returned the fancy mauve tricycle she’d lent us.
Now I would handle it differently: I would be patient, I would be good. I would punch no wall. I would view it as my duty to explain the concept of equal access, of accommodation and inclusion. The social model: places and people (you) are the obstacle, not the difference itself. Hopefully she would come away with a clear understanding of the ADA and its purpose. Hopefully she would better understand her impairment. I’m so sorry that you suffer from being an asshole. It must be so challenging. I see your daughter inherited your enormous asshole; did you consider how unfair it was to pass along this defect when you chose to have children? Your daughter will go through life an enormous gaping asshole. Is it really fair to ask society to pay for her special needs? There’s no cure for being an asshole, you know. Is she able to imagine other people as human? Is she able to empathize? Is she able to stop staring and shut her fucking mouth? No? Well what can she do? Maybe she can go live in some sort of assisted living home for assholes. I hear there some wonderful places that will take assholes like her.
Planet Thrive http://www.planetthrive.com re|shelter http://reshelter.org AAPD American Association for People with Disabilities aapd.com ASAN Autism Self-Advocacy Network autisticadvocacy.org AUCD Association of University Centers on Disabilities aucd.org Accessworks access-works.knowbility.org Catalyst Center (healthcare reform for people with disabilities) cahpp.org Consortium for Citizens with Disabilities c-c-d.org Council for Exceptional Children cec.sped.org Employment Incentives employmentincentives.com NDRN National Disability Rights Network ndrn.org SABE Self Advocates Becoming Empowered sabeusa.org The ARC For People with Intellectual and Developmental Disabilities thearc.org Special Needs Alliance specialneedsalliance.org Electrosensitivity UK http://www.es-uk.info/ Skin Deep ewg.org/skindeep/ EI Wellspring eiwellspring.org/ Stink! https://stinkmovie.com/ Peggy Munson www.peggymunson.com/activism.html JAN askjan.org/ Rachel Carson Council rachelcarsoncouncil.org Beyond Pesticides beyondpesticides.org/ Pesticide Action Network www.panna.org/ www.mcs-aware.org/sah Homesick: Multiple Chemical Sensitivites – Dual Power Productions http://dualpowerproductions.com/homesick/ A Canary’s Eye View http://www.canarys-eye-view.org Ability Maine http://www.abilitymaine.org/resource/guides/mcs.html Chemical Injury Information Network (CIIN) http://ciin.org/ Environmental Health Network http://ehnca.org/ Advice for Non-Toxic Living ourlittleplace.com/multiple-chemical-sensitivity/guidelines-for-nontoxic-living Chemical Injury http://www.chemicalinjury.net Environmental Illness Resource http://www.ei-resource.org Chemical Sensitivity Foundation http://www.chemicalsensitivityfoundation.org www.drsteinemann.com princesstigerlily.com/mcs/mcs_by_area.html The Sierra Club http://www.sierraclub.org Amelia Hill http://www.ameliahill.com
Jennifer Natalya Fink is the author of four novels, including the Dana Award-winning and Pulitzer-nominated The Mikvah Queen. She is a professor of creative writing at Georgetown University. She founded The Gorilla Press, a non-profit aimed at promoting youth literacy through bookmaking, and cofounded the Disability Studies Cluster at Georgetown. jennifernfink.com.
Julie Laffin is an artist living with disabling environmental illness. In anotherlife she made large scale, public performances while wearing overly long gowns. Now living an isolated lifestyle due to myriad environmental triggers, Laffin has turned the camera on herself as a means of navigating her illness and reinventing her artistic practice. julielaffin.com
You will never be out of the woods.
You will never be the woods.
You are the woods.