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 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

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

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.