Monthly Archives: September 2019

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. 


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 re|shelter AAPD American Association for People with Disabilities ASAN Autism Self-Advocacy Network AUCD Association of University Centers on Disabilities Accessworks Catalyst Center (healthcare reform for people with disabilities) Consortium for Citizens with Disabilities Council for Exceptional Children Employment Incentives NDRN National Disability Rights Network SABE Self Advocates Becoming Empowered The ARC For People with Intellectual and Developmental Disabilities Special Needs Alliance Electrosensitivity UK Skin Deep EI Wellspring Stink! Peggy Munson JAN Rachel Carson Council Beyond Pesticides Pesticide Action Network Homesick: Multiple Chemical Sensitivites – Dual Power Productions A Canary’s Eye View  Ability Maine Chemical Injury Information Network (CIIN) Environmental Health Network  Advice for Non-Toxic Living Chemical Injury  Environmental Illness Resource Chemical Sensitivity Foundation  The Sierra Club  Amelia Hill

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.

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.

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

dis/sustain/ability: DEFINED

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


You will never be out of the woods.

You will never be the woods.

You are the woods.


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.


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


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.


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


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


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


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.


“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. 


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: …