CUIDO

Arnieville: A Study In Dis-Comfort Spoken by Jean Stewart, SDS Plenary Presentation on 6/18/11

I want to thank Liat, Devva, Tammy, and all the other folks whose hard work made this year’s conference possible, and Liat in particular for inviting me to speak. I thank our sign language interpreters, and I thank all of you for showing up! I thought I’d start by reading excerpts to you from an extended personal essay I’ve been writing about the experience of Arnieville; it’s an impressionistic series of sketches and reminiscences of day-to-day life in a tent city on a traffic island, as experienced by one who uses a power chair and deals with significant, daily pain. I think the piece will eventually become a book, perhaps a standalone or perhaps combined with other disability essays.

ESSAY EXCERPTS:
I still have flashbacks. A week later, the scenes and sounds of Arnieville still invade me, without warning. I wake in my bedroom and find myself in my tent. I sit in my bathroom and find myself sitting in the Porta-Potty. I cook oatmeal in my kitchen and find myself back in what functioned as Arnieville’s kitchen.

I’ve always tended to associate camping with quiet—stargazing, the silent stolidity of trees. Arnieville didn’t have a quiet bone in its body. The sounds I fell asleep to (or didn’t), and woke to, were the constancy of traffic, all night long—we were, after all, camped on the median strip of a heavily-traveled six-lane city street—and the jangly clatter of shopping carts. If I unzipped my tent window & peered outside, I’d see a lone figure bent over a single, piled-high cart, pushing, pushing, silhouetted in the late-night or early-morning streetlight. Mother Courage, I’d think, drifting to sleep or dragging myself awake, depending on the hour.

Our rented sink, situated across from the porta-potty, out on the far end of our Arnieville island, functioned by means of foot pumps which, of course, quads could not operate. (We called around to various rental companies but couldn’t find any other kind. It would seem quads don’t wash their hands.) Every night I’d wheel out to the sink to brush my teeth. Until Arnieville, I’d never really considered how intimate the act of flossing, of tooth-brushing. But bathed in the creepy surreal glare of streetlights, with cars passing a mere few feet away, slowing to a crawl as drivers and passengers ogled my spit, I longed for the privacy of my own tiny bathroom with a physicality that sometimes filled my eyes.

Occasionally Bob and I would head across the street to the Berkeley Bowl for a breakfast burrito & coffee. I couldn’t go often or stay long—as the buck-stopper, I had to get back to camp and handle whatever situations came up—but for the length of that half-hour or so, I felt…comforted. Safe. Nurtured. And this gave me a deeply-felt window into the experience of homelessness. Seated at a table in the warm store’s deli area, sheltered from the excoriating wind and cold, the poisonous exhaust fumes, the constant traffic noise, and separated from the lonely-making, male jokiness that tended to characterize mornings at Arnieville (I was the only female camper for most of that month), I often, while lingering at the Bowl, felt a wet storm cloud gather behind my eyes and a yearning stretch my chest cavity. For that half hour, I dreaded finishing my breakfast, leaving the store, crossing the street, returning to Arnieville.

And an excerpt from my Arnieville journal:

Yesterday we threw a “media event” which still has me really jazzed. Well, we called it a media event, but since only one media representative (the Daily Cal newspaper) showed up, I’m redubbing it a community event, since the disability community turned out in droves. Here’s the backstory: we’ve been building a sculpture at Arnieville since Wednesday. It’s the brainchild of my dear artist friend David Cook, who argued that since other towns & villages have a statue in their town square honoring their namesake, we should follow suit!So he constructed an armature of steel wire, and a team of enthusiastic sculptors-in-training, including four 10-year-olds as well as 83-year-old Bob, laid on papier mache and strips of cloth. Arnold is now ten feet tall; in one hand he grips a big fat stogie, and in the other–upraised & ready to slash–an axe. He’s not done yet; we still need to put some finishing touches on him–like adding those vicious teeth, for instance–& paint the blood on that blade. Anyway, at yesterday’s event, after the speakers had concluded their statements, our MC said to the crowd, “And now we want to pay our respects to the man for whom our village is named…” Various people drum-rolled on upturned fruit bowls and empty water jugs (using salad tongs & wooden spoons as drumsticks), and then six of us wheeled up to Arnold in our chairs and pied him. Well, five of us. The sixth person was Bob, who climbed up on a ladder to pie Arnold in his face.

Poor Arnold.

So I’ve finally washed the whipped cream out of my hair.But let me tell you about the speakers! All are members of our core group. Adrienne Lauby has severe asthma but doesn’t “look disabled,” whatever that means. Sheela Gunn-Cushman is blind and an out Republican. Vanessa Castro rides a power wheelchair, has CP, and uses an electronic communicator to speak. And our MC, Ramona Galindez, is black & deaf. What a mix, wheee! Ramona did her introductions through the brilliant services of ASL interpreter Sherry Hicks;
Vanessa prepared her speech in advance & programmed her device so that all she had to do was hit a button, & her fabulous words unfurled. Sheela, who compared our struggle for independence (tomorrow is the 4th of July) to the historic fight for independence from England, used her Braille device to prompt her memory. Abril Tamayo interpreted the proceedings into Spanish. I was weeping with joy & huge pride…

In case you’re wondering why so few media turned out for the event, I think that some of them probably felt they’d already covered us a week ago when they jammed our little island on the occasion of our previous press conference. I’m guessing that as our numbers grow–I think we’re now up to about 17 campers in about 13 tents–the media will find us more & more newsworthy.

We do seem to be very much on their radar, despite yesterday’s low press turnout. We’re ALL OVER cyberspace; media stories about us sprout on the Internet like weeds! And oh–the reporter from the Daily Cal who showed up yesterday? She got so pumped, she’s planning to join us & camp out at Arnieville, as soon as she files her story. Ditto the reporter from the SF Public Press. Ditto the KPFA producer who interviewed us yesterday. Arnieville is contagious, I tell you.

I’ve decided to use the remainder of my time doing something much harder and less comfortable for me than reading from my Arnieville essay and, I’m guessing, less comfy for you as well. I’m not an academic. I don’t teach at a university, and I don’t write scholarly papers. I write fiction, poetry, essays and journalism, and I’m a community organizer for social and environmental justice. However, I USED TO BE an academic—I taught women’s literature at the University of Maine—so I have some familiarity with the academic environment, and thanks to Margaret Price’s remarkable book, Mad at School—which you all should read—I’ve refreshed my recollection of academe. In addition, it’s pretty hard to hang out in Berkeley, CA and not brush up against the UC Berkeley empire. Several of my dearest friends are serious, committed, lifelong academics at UCB, so I get to hear about the pleasures and miseries of academic life through the filter of their experiences.

Arnieville was, as you have just heard, hella hard. The lashing wind and cold, the exhaust fumes, the traffic noise, the complete lack of privacy, the primitive sanitation, all took a major toll. What I want to address here is the response of the local disability community—which in Berkeley is one of the most concentrated in the US—to our very public, in-your-face opposition to the slashing of programs serving low-income people with disabilities, as well as seniors & poor folks. We were all over the media, both mainstream and alternative, appealing to folks to come on down, even if only for an hour or two, to hold a sign or otherwise support us. And on some days, Arnieville did draw a lot of local crips, transforming itself into a sort of hip crip café, with wheelies jammed bumper-to-bumper in our paved kitchen area, enjoying the sun and each other. Generally by twilight they scattered; very few opted to spend the night in a tent, because of the physical challenges. We of course totally understood and were grateful for their daytime presences. But who were these crips who hung out at Café Arnieville? Mostly—there were exceptions of course—they tended to be lower-income folks whose lives would be most directly impacted if the proposed budget cuts were approved. This of course makes perfect sense; those who are most effected tend to be the ones who take up any particular cause. You know where I’m going with this, don’t you. The crips who didn’t show up, even for an hour or two—again, there were exceptions—were my academic friends. Now it’s true that academics at Berkeley have been engaged in their own struggle to roll back proposed cuts in funding to the UC system. One can’t be everywhere at once; one picks & chooses one’s battles. Perhaps as long as all of us are socially engaged, that’s what matters. Perhaps it’s okay that precious few people from the academic community came down to Arnieville to support us. But the battle to save UC from the budget ax was not playing out during Arnieville. Arnieville pitched camp from June to July, during which my academic friends were enjoying their well deserved summer vacation. After Arnieville had folded camp, if I happened to run into one or another of my UCB friends at the farmers’ market or the movies, they were uniformly abashed, apologetic. “I MEANT to stop by, I WAS PLANNING to stop by, I was just so busy…” I cut my friends a lot of slack. I adore them, and I’m awed by their various books and scholarship. But I want to posit that there’s a reason, other than busyness, why so few academics showed up at Arnieville. I’m referring, of course, to the “c” word: class. Academics are a privileged class. Townies are not—especially poor townies who live on SSI, Medicaid, and In-Home Supportive Services, like me and most of my Arnieville comrades. However much we may all want to believe that disability binds us together in a common family that shares the universally degrading experience of disability oppression, class and race still divide us. So here’s what I want to say. I want to suggest that we all try, as a small experiment, to step outside our comfort zones, however briefly. It’s what I’m doing right now, exhorting around issues of class when I’d much rather be reading from my Arnieville essay, which I love. Exhorting you all makes me anxious, fearful of offending; I feel unsteady on my wheels. Nonetheless I entreat us all to stretch our boundaries and connect with an issue that doesn’t immediately affect us, whether it be around racism, or gender oppression, or denial of affordable healthcare, or budget cuts to programs that poor people with disabilities depend on. I’m not talking about luxuries here; our very lives depend on those programs.

Whether you live in the US or elsewhere, you almost certainly live in a country or state that is being profoundly impacted by budget cuts; economic infrastructure is crumbling worldwide. Poor people, people with disabilities, and people of color are the first to be impacted by this trend, which some economists are now referring to not as a recession, but as a Depression. People are dying as a result of slashed budgets.

So I entreat you: take whatever action you can to prevent those deaths. If you don’t feel equal to the task of establishing an Arnieville in your home town (I can’t imagine why not), join the tens of thousands of people who are sitting in at their state capitol buildings and refusing to leave until their governments pass budgets that raise revenues by taxing the rich. Write a letter to your governor opposing budget cuts. Try to persuade your city council to join the opposition. Use Arnieville’s letter to the governor, or our letter to the city council, as your boilerplate; you can find them both on our website (www.cuido.org). Whatever you do, do something. [sung] “Keep your eyes on the prize and hold on!” Do something uncomfortable.

LIVES ARE AT STAKE.