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.
- The First Rule is there are no rules. No maps, no guides, no three wise men. You’re on your own, baby.
- 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.
- Assume competence. It’s tricky, right?
- If you pay attention, you will discover who she is and what she can do. And why you think you get to arbitrate.
- Jumping swinging running laughing. Explaining everything you don’t want to know about artichokes. The joy and ing of her.
- 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.
- 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.
- 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.
- You are a visitor. A rule-follower. I am this house, its three. N’s.
- 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 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.