Audio Described/Screen-Reader-Friendly

Q18 DESCRIBED: CREATIVITY, SUSTAINABILITY, DISABILITi

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.

Audio Description of photos in “Creativity, Sustainability, Disabiliti”

CREATIVITY, SUSTAINABILITY, DISABILITi

Neil Marcus

“You don’t have to quote me unless I say something relevant. I am just myself.”

–Manfred Warmuth

portland may08 112

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.

crip planetarium

“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. 

ausie crip

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.” 

–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-2

‘Meteoric’ Neil Marcus, Sketch from Superfest Film Festival SPSU, 2016 

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.” 

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.

foot 2

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

                                                        “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 “bumps”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 ,
”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 here”
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. 

recording

Filming: “disability/disabled country”

Smithsonian video by Neil Marcus/filmed and edited by Jai Jai Noire,

National Museum of American History, 1987/2014

Photo by Gary Ivanek

Q18 DESCRIBED: WALKING INTERCONNECTIONS

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.

Audio Description of images in Walking Interconnections

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 unconscious”. 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

Q18 DESCRIBED: DISART SYMPOSIUM

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.

Audio Description of CSPA Reports: DisArt Symposium pictures

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.”)

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.”

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.”

Photo credit: Eric Bouwens Photography

Q18 Described: The Remote Everyday

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.

Audio Description of The Remote Everyday Layout and Pictures

Normal Flower

  1. The First Rule is there are no rules. No maps, no guides, no three wise men. You’re on your own, baby.
  2. The Second Rule is I lied. You want a rule? Here’s a rule for you, sweetheart babydoll: no interrogations. Don’t ask me, “Can N do this? How about this? Can’t she even do that?” as you decide whether N is allowed to be a person. When you ask such questions about her personhood, you’re only proving that you’ve forfeited yours, asshole.
  3.  Assume competence. It’s tricky, right?
  4. If you pay attention, you will discover who she is and what she can do. And why you think you get to arbitrate.
  5. Jumping swinging running laughing. Explaining everything you don’t want to know about artichokes. The joy and ing of her.
  6. Everyone pays all this money to all these bullshit saints, zen masters, art gods etc to be present. Here. Now. This. Moment. Save your money: N is here. Now. This. Moment. 
  7. I used to say, “N is in her own world, and we’re in it, too.” There’s one world though. Hersandours. Watch oh it shimmers.
  8. The Third Rule is also the First and Only Rule: please kindly go fuck yourself with your pity. It’s jagged, rusty. Relentlessly sharp. It will hurt.
  9. You are a visitor. A rule-follower. I am this house, its three. N’s.
  10. Remember: I don’t love you. 

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.

Q18 DESCRIBED: Letter from the Guest Editor

Audio Description of Q18 Cover

dis/sustain/ability defined

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 first chapter, Guest Editor Bronwyn Preece gives an overview of the issue to come, and an unpacking of the issue’s title: dis/sustain/ability.

Audio Description of Q18 Letter from the Guest Editor

Dear Reader,

Buried amongst the leaves and lakes, memes and moss, skin and sidewalks, woods and wheelchairs, normal and nuance… dis/sustain/ability begs us to consider, albeit subtly, who can claim disability in this Anthropocenic age of constant climatic flux? 

This CSPA special-themed issue offers a diverse array of artistic responses, underpinned with strong critical leanings for interrogating the overlaps of sustainability and disability and the relevance of conjoining these concepts in/for today’s world.  Drawing on practitioners and/or scholars from three continents – some self-identifying as ‘disabled’, others not – this issue grapples with the neologistic tensions, hurdles and gifts of our cultural, social, economic and environmental propensities towards and with notions of disability.

dis/sustain/ability embraces transnational intersectionality and the multiple imbrications made accessible through doing so.  This issue serves as a catalyst, as gentle invoker, as provocateur, as reflective medium through which a variety of ideas are offered up by contributors.  It has inverted blatancy through diverse response. It asks more questions than it does try to form firm answers.

As guest editor, it has been nothing short of inspiring to gather the contributions.  The curated call was framed openly, welcoming broad and interpretative possibilities to what was provoked by the notion of dis/sustain/ability.  The issue wheels us down new paths and forks in the road, encounters the UN Convention on the Rights of Persons with Disabilities, fingers away notions of freaks, examines irreverence, marginalization, activism and policy, adds dimension to crip vernaculars, poeticizes the political, swears at homogenization, artistically interrogates impairment, sews together and performs through the very being of disability, sustainably…

It has been an honor to curate this issue….

Bronwyn Preece,

PhD Candidate, University of Huddersfield: Performing Embodiment: Improvisational Investigations into the Intersections of Ecology and Disability

www.bronwynpreece.com

dis/sustain/ability: DEFINED

Each contributor was asked to ‘define’ dis/sustain/ability in 25 words or less…

Jennifer:

You will never be out of the woods.

You will never be the woods.

You are the woods.

Julie:

At first I was crashing and burning—consumed by loss. Acceptance was arduous; I was being prepared to have all of my perceptions changed forever.

Dee: 

Interdependency, vulnerability, co-habitation, across and between, you/i/we/me/us. 

Neil:

We each use systems to make our worlds usable and thriving. The bright sun makes our lives work in so many ways. A good joke sheds light on life when we need laughter.

Petra:

Continuing to be in flow, through the years, while living in an ableist society. Searching for connection, taking responsibility, engaging, widening the circle.

Stephanie:

breathe inside fire or water or soil. make like a succulent, plump and adaptable. try on constraints then wiggle. notice movement – micro / macro.

Bree:

arranging human, physical, financial, and environmental resources in such a way that every being can live a meaningful, productive, and comfortable life now and into the future

Susanna:

To separate these three words…though dis is not a word by a slash….makes them read as separate. 

Dis is to negate, deem valueless…sustain is to lift up, support for all time and forever…ability is the skill, the life within that understands and knows how. Together…dissustainability…though unrecognized or hidden, is the life within that knows and breaths within us all.

Sandie:

“Disability” and “ability” are not binary terms; making art about Crip/disability experiences is to sustain disability culture and the heritage of resistance and resilience. 

Ray:

It’s the long slow note made up of a feast of harmonics, always in flux, ever changing, transforming and subverting.

Bronwyn (guest editor):

… circles with edges, borders with welcome signs, awareness of networks, improvisation, interdependence, adaptation, vitality, necessity, inextricability, knitting/weaving/breathing-being…living in shared uniqueness/norming difference…verbing: …