Arnieville and the Fight for Disability Rights
by Marg Hall
There’s no mistaking it: I’m getting yelled at as I ride my bike across two lanes of traffic. Bob watches and wildly gestures, expressing his disapproval of my maneuver. He’s deaf, so his “yelling” is non-verbal. This is my introduction to Arnieville.
It is the summer of 2010, and a small group of disability rights activists, their caregivers and allies, have chosen my neighborhood to set up a disabled rights protest. They’ve erected tents, a porta-potty, banners, literature tables, signs, and have food to share. A small group of hardy souls are camped out in the public median strip on a very busy street in South Berkeley.
“Our Homes, Not Nursing Homes” is what the sign says. I think to myself, “This could be interesting!” Parking my bike, I walk up to the table where several women my age, in scooters and wheelchairs, are welcoming the public. I know about nursing homes, and how dreadful, even life threatening, they can be. I helped take care of my mother-in-law who resided in a number of these homes. But I’m not so familiar with the home care safety net, threatened by state budget cuts that seem to motivate this camp out.
One of the women explains that IHSS (In Home Support Services) is a state-run program that keeps poor and disabled persons in their homes and communities. It provides basic assistance to individuals unable to perform self-care activities in their homes. As disabilities vary, the number of hours per month allotted to each individual to hire an attendant depends on the level of need.
The proposed cuts would destabilize people’s fragile ability to survive independently. The disabled, many of whom are still quite young, will be forced to leave their homes and communities and become imprisoned in nursing homes.
Some will resist and join the many disabled homeless on the streets. Others will stay at home with less care and increased suffering. Preventable health problems can quickly escalate because of inattention, poor nutrition or hygiene, leading to medical crises and emergency room visits. No doubt some will die. Repeated cuts to these safety nets are not only cruel but costly, as emergency rooms and nursing homes are comparatively expensive options.
To protest this threat, Jean explains to me, organizers decided to take inspiration from the tent cities named “Hoovervilles” which sprang up during the Great Depression of the 1930s. They call this encampment “Arnieville,” named for then-Governor Arnold Schwarzenegger, presided over several years of budget cuts during our own Great Recession.
Jean explains to me the nature of her disability. She has been disabled for many years as a result of an occupational injury (pesticide exposure). She suffers with chronic pain and mobility limitations. I volunteer the information that I too am disabled. It surprises me how easily I utter these words to a complete stranger: “I have an invisible disability.” This is a first for me. I feel a little like I’m coming out.
I explain I’m in a hurry to get back to my coven for a meeting, but will return. One of the others, Iris, with flowing grey hair and travelling on a scooter, tells me she’s a Witch, too. Well, I’m definitely coming back to visit these women!
Later that day, I return with a large banner to hang up at the camp, and decide to join in their protest, which quickly becomes my protest.
Even though at this point in my life I don’t need to rely upon In Home Support Services or the other state safety net programs, I know that these are important lifelines. Unless we’re rich, any of us at any time could need help. For the most part, all of us are only temporarily “able bodied,” and once disabled, it’s a downward spiral. One major illness or disability can push us out over the abyss.
For seven years I have been coming to terms with huge personal changes in my health and the growing realization that I was disabled. I am no longer able to work, rarely able to socialize or travel, struggled with isolation and felt growing anger about the prejudice and social stigmatization I felt. My disability is not apparent. There are good days and bad days. (I have chronic pain and environmental injury).
I needed to connect with the disabled community, but didn’t know how.
How lucky I am! Almost immediately I recognized that these folks with disabilities, these street activists, are my people. I need their help, and think I can help them, too. Every day I stop by, if only for a few hours. Neighbors bring food, supplies, and equipment. Others donate money and stop to lend a hand. Drivers honk their horns in support. Homeless people, many with disabilities, find a safe home at our encampment. Word spreads. More folk with disabilities stop by to share food, visit, attend workshops, network for support, and strategize on how to fight back. Sign-up sheets multiply, a Facebook page is created, and public space is transformed into an open-air center of organizing.
We are a quirky bunch — everyone has both special needs and valuable talents. Sheela, who is blind, is also a Pagan with inner vision and is a great singer. The homeless men, attuned to night threats, stand guard. We ask Ramona, whose first language is ASL (American Sign Language), to emcee one of our rallies. Those of us with chronic mental and physical conditions disappear and return seamlessly, depending on what kind of day we’re having. The crips need lots of space for their chairs, and when a messenger is needed, they can move really fast!
It’s all so chaotic yet somehow it works. I no longer feel so out of place with my own special needs. No elaborate explanation is necessary — they get it. I feel understood, welcomed, valued. My heart expands and I feel more alive than I’ve felt in a long time. It is nothing less than magical. The change within me is thrilling, but the work of political change is unfinished and daunting. The budget axe still hangs over our heads.
After a month (we were now officially the longest disability rights protest in US history), we decided to change tactics. Our last day at Arnieville we held a closing ritual of sorts — not explicitly pagan but pretty close.
The group then traveled to Sacramento, where the budget was being debated and our fate decided. In one protest, we blocked the major intersection outside the State Capitol Building by setting up tents and using wheelchairs and gurneys. We donned hospital gowns. These actions were designed to demonstrate the effects of budget cuts on our lives. Twenty-two of us were arrested. The day before the budget passed, we returned and more of us were arrested at a sit-in inside the Capitol Building.
In 2010, we succeeded in holding back the worst of the cuts, although there were some. What appears to others to be relatively small cuts can have devastating impact on the poor and disabled. This is especially true since we’re starting to feel the cumulative effect of past cuts. In 2011, the fight will be even harder as state budgets all around the country are in crisis because of the Great Recession. The situation in California is dire. The only way out, unless were are to suffer death from a thousand cuts, is to tax the rich. But the political will is weak for this.
California has a new governor, Jerry Brown. The Arnieville protest encampment is no longer, but the organization responsible for its creation, CUIDO, lives on. CUIDO stands for Communities United in Defense of Olmstead. Olmstead was a court case decision by the US Supreme Court in 1999 that outlawed the systematic segregation of our people into nursing homes and institutions. The historical ableist approach has been to get the crips out of sight so everyone else can feel better: to remove us from our homes and communities. This practice is offensive to the disabled. It is discrimination. That’s why IHSS (In Home Support Services) is essential to independent living, and to the protection of our civil rights.
We will use our bodies to defend these rights. We’ll do whatever it takes! We will stand up, roll forward, sit in, and lie down. We will go into the streets, around barricades, cross thresholds and into buildings where the rich and powerful gather and speak directly, proudly, and if needed, rudely, this simple truth: our lives are precious. The greed and enormous wealth of the rich in the midst of such widespread pain is disgusting. We demand justice and will need allies. There’s not much time to lose, as these cuts are deadly and lives are at stake.
Martin Luther King Jr. warned us that a nation that spends more on its military than on programs to help people, approached spiritual death. We refuse to participate in spiritual death. We will fight for our lives and for our souls. Most likely wherever you live, this fight is happening. Join us.
Marg Hall is a Bay Area Reclaiming Witch, a political activist, and is also a person living with an invisible disability.
For more information on CUIDO, visit cuido.org