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  Mad as hell -- and fighting for our lives

By Zen Garcia

photo of zen garcia
Zen Garcia
Photo by
Tim Wheat.

In every state today, it seems, budget cuts are reducing the money set aside for alternatives to institutionalization. The President's proposed federal budget wants to make permanent dividend tax breaks for the wealthiest one percent of Americans. But it slashes programs for veterans and poor people.

As many of us across the country struggle to manage the impact these cuts will make upon our lives, thousands of people returning from Iraq with lifelong disabilities will find themselves pressed by the system they just fought to defend.

Where does a movie like Million Dollar Baby leave the millions of us who have had to struggle a lifetime against systematic discrimination, against insurance companies and government agencies bent on denying us the basics necessary for survival?

People who use ventilators will be too expensive for in-home services under Gov. Perdue's plan: they have to live in a nursing home.

Here in Georgia 116 of us are fighting a proposed cap of the Independent Care Waiver Program. Governor Sonny Purdue wants to set it up so that no one person can receive more than $36,500 a year for in-home services. This $36,500 figure has been reached because it is the cost of one year of care in the the state's cheapest nursing homes.

Capping the program at this level means there would never be any way for someone over the years to pay more for care, even if they needed it, even if they needed to raise wages for their personal care workers or if they came to need more hours of help a week than the cap would pay for.. The cap at this amount would also bar "high-level quadriplegics" who need lots of help -- especially those who use a ventilator -- from ever being able to pay for the level of in-home services they need.

Those people would be too expensive for in-home services under Gov. Perdue's plan: they have to live in a nursing home. Gov. Perdue isn't proposing a cap on payments to nursing homes. No; that never happens. There's always money for the nursing homes.

On February 27, Clint Eastwood's Million Dollar Baby swept the Academy Awards, winning for Best Actress, Best Supporting Actor, Best Director and, finally, Best Picture. Alejandro Amenabar's The Sea Inside was voted Best Foreign Film. Both films offered sympathetic portrayals of the killing of quadriplegics.

Hollywood's message? it's better to be dead than to be faced with having to live the rest of life with a high level disability such as quadriplegia. Movie viewers seem to quietly agree with Eastwood's conclusion, muttering as they stroll out of the movie theater back into their able-bodied lives, "Ya, I wouldn't want to live like that either." They would never second-guess the murder of Maggie. They would never believe that she could live happily, overjoyed at having another chance at life, like I was.

Where does a movie like that leave the millions of us who already have disabilities, who already have had to struggle a lifetime against systematic discrimination, against insurance companies and government agencies bent on denying us the basics necessary for survival?

Three words: mad as hell. And why shouldn't we be?

Instead of setting up a network which lets people to return to independence through interdependence, living in their own homes and receiving care from workers they hire, Georgia instead offers a system that funds nursing homes. The state is quite willing to warehouse us in places where we're segregated from society, even if it costs more. The Independent Care Waiver has a cost cap. Nursing homes have no cost cap.

The kind of care received in some of these places has resulted in fines for abuse -- a case of the state fining the same nursing homes it rewards for keeping the cost of care down to a minimal per individual.

I have already documented these abuses in my article "Right To Dignified Life" available at my website www.endeavorfreedom.org. In that article I cover the story of Carol Carr, who watched her husband and three sons suffer from Huntington's disease -- but suffer even more from the "care" they received while committed to Sunbridge Care and Rehabilitation Center in Griffin, Georgia.

Carol Carr was mentally exhausted from years of watching the nursing home neglect her loved ones. James Scott said his mother "shouldn't have had to go down there every day, changing them (Michael and Andy) and doing the work for the nursing home. It seemed like every time one of us went down there, one of them was just sitting there in pee.

"We kept having problems with the nursing home, getting them to change their bed linens. We had a big fight with them , trying to get them to help. They left them in there soaking wet," he said. "We went down there Friday, and it was the same thing."

Family members knew it was just a matter of time before Carol Carr cracked from pressure.

Seeing no way out, fed up and in desperate straits, Carol went into the nursing home room where her two sons were kept in filth and beset by painful bedsores, and shot them in the face and the neck. She then walked to the lobby where she sat down on a sofa awaiting arrest.

One year before the fatal shooting, Sunbridge had been cited as one of Georgia's most chronic violators of state nursing home staffing requirements. They refused to hire enough staff -- to keep costs down, you see. In 2000, inspectors found that the facility placed residents in "immediate jeopardy" by, among other things, failing to properly treat bedsores. In some cases, the staff was not even aware residents suffered from the sores, inspectors said.

We'd both been robbed and held up at gunpoint before we finally, after a year and a half, got on Georgia's Medicaid waiver program, which finally got us the independence we needed.

The federal government has imposed more than $100,000 in fines against the SunBridge-Griffin facility as a result of poor care, according to records from the Centers for Medicare and Medicaid Services. Only 18 staff members were on duty at the 140-bed facility when the shooting occurred.

The kind of care received in nursing homes has prompted many quadriplegics -- like Larry McAfee, also from Georgia -- to fight for the right to die rather than live within the constraints of a nursing home environment.

There are quadriplegics like me living grand lives. But it was not always so. The year was 1995. I was scared out of my wits about the future. I had no idea what life would be like for a C-5 quadriplegic. I could do very little in the way of caring for myself.

I remember waking up day after day at the Shepherd Spinal Injury Center here in Atlanta, recovering from a crash when the van I was in lost its brakes on a California mountain road. Dreams were my only reprieve at the time, ghosts of my former life

Not one of us had ever envisioned life leading to this. When I was released to my parents, none of us knew what to expect. Their house was not the least bit accessible. I had a hospital bed set up in the living room because the wheelchair I used could not fit through the door to my old bedroom.

I would have mired myself in pity had my presence at home been that of a quiet individual suffering. But it wasn't. Watching my aging parents' relationship self-destruct over dealing with my disability made me force myself to do something.

I found out about and applied for Options Cottage, a 6-month-long independent living program at Warm Springs, Georgia. It had been started when Franklin Delano Roosevelt was president; he spent time there.

It was there that I finished my second book "When the Evening Dies..." In the process, I found myself again.

Determined not to burden my parents further, I worked with Georgia Vocational Rehabilitation to find a way to a return to college. Voc rehab would give me funds for 3 1/2 hours of assistance a day. Add that to the two hours of help a day I was getting from the state's Community Care Service Program, and I had my getting out of bed and getting back into bed covered. The in-between would be spent at school and working for AmeriCorps, which would also help fund my education.

photo of book cover

Zen Garcia's book, A Different Way of Being, is an autobiography in poetry, its 300 pages ranging from his first waking days after his accident to his activism on behalf of other disabled people, interspersed with photos, and told with Garcia's own brand of mysticism and lyricism, bent to the service of a better country for us all.
Available for $18 ($15 plus $3 shipping) from zengarcia@alltel.net (put "book purchase" in subject line).

I was able to manage by pooling resources with another quadriplegic; we were both going to Mercer University. Together we were able to afford a 3-bedroom house in the ghetto part of Macon, Georgia, where there were assured signs of gang activity and random gunshots throughout the night. We'd both been robbed and held up at gunpoint before we finally, after a year and a half, got on Georgia's Medicaid waiver program, which finally got us the independence we needed.

We were lucky enough to have negotiated life while on a waiting list to receive services through the Independent Care Waiver. But having survived those initial years of minimal care and ultimate struggle, I can speak from my own experience of coming up through the system with quadriplegia: The lack of state support to enable you to live independently is the most onerous burden the government can place on individuals who already have an incredible amount to deal with.

In an ideal situation, when a person becomes injured, someone familiar with the system would visit them, in the hospital, to tell them -- and their family members -- about all the programs available to help them and their families to take control of their lives again, without that unnecessary struggle the government imposes through its "institutional bias."

But we're far from that ideal situation.

Nationally, 85 percent of the long-term care Medicaid budget goes to warehousing 2.5 million people in nursing homes and other institutions. Given a choice, most of them would love to live in their own homes, part of their families and communities..

Nobody wants to live in a nursing home. That one fact has been the reason many people with high-level disabilities seek help in ending their lives. However, I would wager that, had the system been set up to immediately help them deal with the initial trauma and then through different programs restore them to inclusion and independence, showing them disability is a natural part of living life sometimes; the thought of suicide would have never been more than a passing phase.

But back to reality: Governor Purdue is willing to help, so long as it does not cost more than what the state would spend to place us in a nursing home like Sunbridge.

The image-makers in Hollywood would have us believe people with disabilities incapable of living differently, happily, wholesomely with disability. They portray us as better off dead and good riddance. In rewarding Eastwood with Oscars, they spit in the face of every person alive with disability who has wanted desperately to live -- even if it meant using a wheelchair or depending on a machine to breathe.

And while Hollywood cheers Eastwood for taking out to pasture the destitute little cripple, Florida Judge George Greer sentences Terri Schaivo to death for a third time by okaying the removal of her feeding tube, on which she depends for food and nourishment.

The last time her feeding tube was removed, Terri Schiavo endured six days of forced denial of food and liquids. They don't even force such cruel and unusual punishment on death-row inmates. An emergency session of the Florida legislatures passed "Terri's Law," saving her life. The law, though, was later ruled unconstitutional.

Despite overwhelming circumstantial evidence, Greer sides with the Michael Schiavo, the husband who has fathered two children by another woman. Michael claims that Terri sometime long ago in passing conversation said that she would never want to live with a disability, that she would rather die instead of having to go through life like that. He says he loves her so much that he must see this through, that he must fight to have Terri perish, because he wants to see her wishes fulfilled. [link to third book] I think he's desperate to cover something up.

They say that Terri is in a "persistent vegetative state." But if you watch videos of her with her mother and father, you can see that she most definitely responds to stimulus and tries to interact as best she can. Her mother and father have been fighting for years to get her released to their custody. Greer and the Florida courts have consistently denied their requests.

Louisiana Secretary of State Fox McKeithen now finds himself in the fight of his life, having incurred a C3-4 cervical injury as a result of a fall in his home on February 16. Doctors say that he is paralyzed from the neck down and will now be dependent on a ventilator -- just like Christopher Reeve was, and like many of the people that Gov. Purdue is trying to force off the waiver. He's now at Shepherd Rehab Center, just like I was.

-- Z. G.

More on Louisiana's waiver program.

In a reality where disability benefits and programs are being slashed, where Social Security is about to be raped, and incurring a disability means life in a crappy piss-smelling nursing home, Hollywood support of euthanasia fits right in. Deny us any way to live in our own homes as part of the collective community, sentence us to death by starvation, and then portray on film that it is better for us to die than live with disability, and perhaps you get public support for the euthanasia agenda about to be tried in the United States Supreme Court through Gonzalez v. Oregon.

What will an Oregon win at the nation's highest court mean? It will mean that a whole population of really expensive tax hoarding people can be quietly offed as long as there is no family member or witness available to complain enough to deny physicians their executive right to euthanize someone considered worthless anyway.

Look at how many people came out in defense of Robert Latimer -- even volunteering to serve some of his prison time for him! -- after he murdered his 12-year-old daughter just because she had cerebral palsy.

For a long time, ADAPT has been saying to the government suits in charge of the current bias: "Hey -- what we are trying to do to make things better for us disabled people is something that concerns you too. What we do now is laying the groundwork for you yourself, your loved ones, and your family in the future."

Posted March 15, 2005

Zen Garcia is an ADAPT organizer, poet and freelance writer. Visit his website at www.endeavorfreedom.org.

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