Stopping traffic in Sacramento-disability rihgts activists fight to remain independent!

The Terminator was not home to see the women in wheelchairs and hospital beds hauled away by Sacramento police. Over 20 people blockaded the street outside California’s state Capitol with tents and wheelchairs. A military man in a Hummer revved his engine as he yelled, “Why do they gotta be out here in the streets like this?!” With passion, a woman replied: “Because I’d rather get arrested in the streets than die in a nursing home!” The cops were their own comic relief, slicing our larger-than-life Schwarzenegger effigy with knives, shoving it over in a dramatic enactment evocative of Saddam’s statue being toppled during the fall of Baghdad. All in a day’s work, they dragged the gruesome, axe-wielding puppet into custody.

California’s budget deficit has led politicians to cut essential social services yet again, pushing those teetering at the margins of society into grave uncertainty. The latest round of cuts affect the potential independence of 470,000 elderly and disabled Californians who depend on the landmark In-Home Supportive Services (IHSS) to accomplish daily tasks of eating, bathing, cleaning, and going to the bathroom. The program was once a shining example of the transformative power of assisted living in keeping folks out of nursing homes and other live-in medical facilities. Should the cuts go through, more than 308,000 elderly and disabled Californians could lose their health care workers and be sent to nursing homes or county hospitals. Activists in the disabled community contend that this forced institutionalization is illegal under the Americans with Disabilities Act.

In June, a coalition of disabled and their allies began a month-long camp-out on a median strip outside a Berkeley supermarket to protest Sacramento’s proposed reductions to health care services. They called it Arnieville, a modern-day version of the Hoovervilles that cropped up across the country during the Great Depression. For 30 days, they camped outside, screened films, held workshops on disabled culture, and spoke with passersby about the difficulties the Berkeley disabled community faces. The intent of the encampment was to focus the frustration and anger felt by many into actions that would empower people to change the course of their destiny. “Most people you see on the streets are either disabled or foster care kids. The government is failing its end of the social contract, to be a safety net for those with no support network,” according to Mandy DeMuff.

Forced institutionalization violates peoples’ basic right to live in community, and it does not save money in the long run. A study by Connecticut College Professor Candace Howes shows that California could save nearly $300 million per year if, instead of eliminating the IHSS program, it transitioned one-third of its nursing facility residents back into the community. Housing one person in a nursing home can be as much as 5 times costlier than paying the wages of a health care worker to provide services in the home.

“The politicians don’t realize that one day every single one of us will be disabled,” community organizer Sheela Gunn told me. “They have no idea that half the people in this country live one paycheck away from homelessness.”

Sheela is one of thousands who depend on social security to supplement income lost due to disability. They pay for rent, food, and medical care on a shoestring budget. But the balancing act of social security is a double-edged sword — the government’s guidelines for those living below the poverty line make it impossible for an SSI recipient to save money, keeping them perpetually on the brink of disaster. Even basic purchases like a new wheelchair or respirator must be routed through advocates and friends to avoid having their bank accounts seized. The penalty for savings means recipients must spend their meager earnings month to month, making it nearly impossible for those without a support network to rise above their situation.

Disability and houseless rights advocate Dan McMullan talks about the need for popular uprisings throughout California to confront the symptoms of poverty in afflicted communities. “The Arnieville encampment broke through the myth that people are disabled and poor because they’re bad or unwilling to pick themselves up by their bootstraps. This story of the American Dream is what the rich tell us every day so they can continue wiping their asses with $100 bills.” He suggests that decentralized actions throughout the state have the power to apply grassroots pressure to turn the tide against cuts to disabled services

The harsh prospect of being forced out of their home into an institution is causing some to make grim preparations. I spoke with a woman in a wheelchair who matter-of-factly described her decision to undergo surgical sterilization. Her reasoning was, when she lost her health worker and moved to a medical institutiion, she would not become pregnant if sexually assaulted by an aide at the nursing home. This woman’s story is a grim reminder that the cold statistics of Sacramento’s balance sheets have real human consequences.

The adversity faced by many in the disabled community creates a pluck and determination that is greatly inspiring. Their grace and humor displayed by those in terrifying circumstances remind us to confront these grave times with a light heart and share our experience compassionately, even with those who may not have the ability to listen. They show us the richness of experience those with little material resources can share, and point out the spiritual bankruptcy of wealthy politicians who amass their riches at the expense of others.