Slumgullion #48

Just a few good links. That's all you need, right?

Bush cuts outpatient Medicaid services -- You heard about this parting gift from our Commander 'n' Thief? The Wonk Room at Think Progress has the details:

After arguing that legislation to cut over-payments to private insurers would “harm beneficiaries by taking private health plan options away from them,” President Bush, on Friday, “narrowed the scope of services that can be provided to poor people under Medicaid’s outpatient hospital benefit.”

In which the Netherlands endangers reproductive freedom -- Sylvia at Problem Chylde writes about a proposed bill that wants any woman deemed unfit to parent to be forced to take contraception for two years or any children she bears will be taken away from her at birth. I followed one link backward from Sylvia to a column for the Toronto Star to a blog post at Disaboom -- isn't it nice to know someone at a major daily reads a crip site?

Where neurodiversity meets feminist theory -- Lindsay at Autist's Corner has a three part series where she assesses an article by Kristin Bumiller titled "Quirky Citizens: Autism, Gender and Reimagining Disability" in the summer issue of the women's-studies journal Signs. Interesting writing from a blogger I hadn't found until now.

Another typical story of health care in the U.S.

At Feministe, La Lubu tells the story of her daughter's premature birth, relating the loss of her job, fight for health care benefits, and the tedious and often unbelievable details of "welfare" coverage of medical bills. Here's a couple excerpts, but go read the whole thing:

.... I received my first bill from her original hospital. It came after six weeks of treatment—before my daughter was officially listed as being under the insurance plan (see, you have to produce a birth certificate first, and there’s a time lag between when you can obtain the official birth certificate from the state, and the processing of the paperwork with the insurance plan. First, I had to prove that the baby that came out of my body via the fully-paid for emergency c-section, was actually mine. Don’tcha just love bureaucracy? It didn’t include neonatology services, radiology services, pediatric cardiology, respiratory therapists, or even surgery. But it was about $750,000 just the same. Now remember, that was before the hefty insurance discount was applied.

And I laughed. Yes, I laughed. What the hell else could I do? Who the hell did they think was going to be pulling $750,000 out of her ass? Because it sure wasn’t me. At the Ronald McDonald House, I traded war stories with the other parents. Most of the parents there were long-termers—waiting for the call for new organs for their sick children. Everyone had lost their jobs because of their children’s medical crises. At least once. I met folks whose employers couldn’t be bothered to give them a week of time off. I met a family where both parents had hepatitis C (and that ain’t cheap, people); they were waiting for their toddler son to get a lung transplant. People from all over the nation. A nation of isolated medical crises.

and

There are many myths in These United States (why do I keep wanting to type “Untied” States?). The myth of Individuality reigns above all. The idea that one stands, or falls, all on his or her own. It is at the root of the notorious historical amnesia this country suffers from. It informs racist and sexist beliefs. It distorts the ability of various progressive groups to organize around issues central to the fabric of our lives, let alone form coalitions with other progressive groups to aim towards and achieve justice for All. It is the poison in our well. This ridiculuous notion that we can manage without the assistance of others. (and can I just mention that in the middle of the word “ridiculuous” there is a “culu,” or ass? So that while I can’t prove it, the true etymology of “ridiculuous” probably refers to laughing one’s ass off?)

We stand on the shoulders of those who went before us. We stand with the help of those who stand with us, whether we are aware of it, or whether we choose to admit it. In the United States, we are taught that we stand “on our own two feet,” as if we weren’t taught how to stand, how to walk. We are supposed to “pull our own bootstraps” regardless of whether we have shoes, or broken laces. Even those of us who are not taught those lessons in our family of origin are affected by them, as the Cult of Individuality permeates the atmosphere outside the front door: in the schools, in the workplace, and especially in the political arena, where the values of Calvinism are given a fuel injection of Ayn Rand. We are told that those who stumble are careless. That they should have planned better. Should have had more savings. Should have foreseen the deluge. Didn’t they know that it was inevitable? That they aren’t among the saved?

That is what is behind the opposition to S-CHIP. That those currently without a safety net, save that of their own wages and savings, should necessarily suffer. Should declare bankruptcy. It is their destiny. After all, if they were Worthy People, they would be able to come up with the money on their own. They would be able to find a sponsor. Hence, the number of benefit parties, barbecues, chili cook-offs, mostaccioli dinners, and poker runs held at taverns, union halls, churches (temples, masjids), and social clubs throughout the midwest and elsewhere; a desparate attempt to come up with some kind of money, and prove some kind of personal worth in the face of cancer, accidents, heart attacks, strokes, premature birth, job loss and any number of cascading personal crises that don’t tend to arrive alone. Half of all bankruptcies in the United States are due to medical bills.

***

My own posts on the costs of health care include this and this and this.

Overdue bill threatens life support

From The Flint Journal in Flint, Michigan:

Bedridden with a chronic lung disease, Patricia Alsteen depends on machines to help her breathe.

But the mother of four said she's worried that her electricity will be shut off because she can't pay a sizable power bill that accrued, in part, because of her life-support equipment.

For weeks, Consumers Energy Co. has been threatening to shut off her services, she said.

"I understand I owe them money," said Alsteen, 43. "I would pay it if I had it."

A spokesman said Consumers is holding the account open while she works with agencies that might be able to help with her energy bills.

"We are waiting to hear back from the customer about contact she made with some other agencies, and we're continuing to work with her on a payment plan," said spokesman Terry DeDoes.

Alsteen said she is on Social Security and hasn't been able to work for several years. She has a caregiver and lives with her four children, ages 7-18, and a grandchild, 2.

She's been hospitalized several times over the past year, including once for a bout with pneumonia that nearly killed her, she said.

"Every time I go in the hospital, I have to pay somebody to come and take care of my children," she said.

During the day, she receives oxygen from a machine through a trachea tube. At night, she is on a ventilator.

Over the winter, Alsteen paid about $230 a month to Consumers under a seasonal billing protection plan, she said. But because she used about twice that amount of energy, a bill of more than $2,000 came due when the plan ended in May, she said.

A recent television news report on her situation drew a couple of donations, including $450 from an Owosso woman who took up her cause and started a fund at Charter One Bank in Owosso.

The benefactor, Jenny Roberts, said the overdue power bill is literally a life-and-death situation for Alsteen.

"When she was crying, I was crying," Roberts said. "She said, 'If they shut off my life support, I'll die.'"

DeDoes said Alsteen didn't need to pay the entire balance.

Consumers granted a 14-day extension for her to pay an agreed-upon sum, then cut the payment to $321, DeDoes said. A church stepped in and covered that bill, he and Alsteen said.

The utility also sent forms on a discounted rate for life-support equipment, along with a list of agencies she might call for help, he said.

Alsteen said she already receives the discounted rate and hasn't been able to find much assistance.

"I called agencies, I called churches - everywhere I could think of or where people told me to call," she said. "None of the agencies had money.

"I feel kind of like a bum asking people for help. I'm not that kind of person."

Consumers planned to speak with Alsteen on Monday to discuss her situation, DeDoes said.

"We encourage customers to call us as soon as they believe they are going to have a problem paying a bill, and not when they receive a shutoff notice," he said.

"That way, we have more time to set up payment plans and work with a customer."

Donations can be sent to The Patricia Alsteen Fund, c/o Jenny Roberts, c/o Charter One, 200 E. Main St., Owosso.

Movie review: Emmanuel's Gift

I didn't expect to like this 2005 documentary, the story of Ghanaian Emmanuel Ofosu Yeboah, born without a tibia in his right leg and one of the two million people in his country living as a second class citizen.

Why did I dread watching this flick? Yeboah "overcomes adversity." That tired inspirational trope that dominates stories of disabled people's lives. He rides a bicycle across Ghana. I've never really understood athletic endeavors meant to be attention-getters for some cause. Go pound some nails instead, okay? Do some activity with actual value beyond it's celebrity. And the film is narrated by Oprah Winfrey, who has never before uttered the words "disability rights," though she has no problem exploring the medical aspects and social misfortunes of impairment. Oh, Winfrey's had guests who happen to discuss ableism and crip rights -- Chris and Dana Reeve (to some degree) and William H. Macy* (eloquently) are celebrity examples. Never once did I see her take that bait and follow the thread of social injustice or call for people to demand change.

So I had reservations aplenty.

But here's the thing: In Ghana, where an astounding one in ten citizens have some sort of disability, infanticide of visibly disabled infants is common. If they aren't killed or hidden away shamefully, disabled Ghanaians become beggars on the street. That is the range of options.

So a guy with one working leg riding a bicycle across the nation -- 380 miles -- and calling for disability rights and opportunities had an incredible impact on a society that thought it had everyone in their rightful place.

When Yeboah was born, his father saw him and promptly abandoned the family. His mother was encouraged to kill her son, but instead she sent him to school and taught him he deserved all the privileges and opportunities nondisabled people have. When Yeboah had trouble getting the other schoolkids to let him play with them, he ingeniously saved his money (no easy feat) and bought his own soccer ball -- a rare commodity. The price of playing with it was letting Yeboah join in the game using his one full-grown leg and crutches.

With his mother ill and medical bills to pay, young Yeboah shined shoes for money. He left his village and family behind to go to Accra, the nation's capital, to earn $2 per day shining shoes instead of just $1 per day back home. So, he's a teenage boy on crutches shining shoes far from home to support his family -- mom and two younger siblings, I believe. Yet after his mom dies and he applies to the Californian Challenged Athletes Foundation (CAF), he asks not for cash but for a bicycle because he's thinking big. He wants all Ghanians to see that disabled people can do more than be street beggars.

Yeboah's bike ride makes him a national hero and celebrity. The film follows his visit to America, where he competes in some athletic events and decides on amputation of his limb so he can wear a prosthesis. He returns home without his crutches, but with political momentum. We see him meeting with tribal chiefs, disabled beggars whom he encourages to reach for more, and most poignantly, the father who abandoned him.

The film's slick editing interferes with the story, but the celebrity created by Yeboah's bike ride forces public officials to reconsider national disability policy and respond, as one canny bureaucrat notes, that ''we may have underestimated the urgency of the matter." Returning to the United States, Yeboah meets with fellow Ghanaian and then-U.N. President Kofi Annan, and also receives grant money for his goals of helping other disabled Ghanaians and starting a wheelchair basketball team for the 2008 Paralympics in Beijing.

In a historic meeting at King's Palace in Kibi, Ghana, where because of superstition and stigma no disabled person has ever before been invited, King Osagyefuo praises Yeboah and throws his support as leader of 2.5 million people in Eastern Ghana behind efforts to improve the lives of disabled citizens. Says King Osagyefuo:

“The society and country are not set up to take care of handicapped people. Emmanuel has tenacity, endurance and he has a strong heart to do the things that he is doing and to use what he has done as an example for other disabled people. We will support him and tell the government that they are also part of us—they may be physically challenged, but mentally and intellectually they are the same as us.”

The King's statements are nothing short of revolutionary in a culture where disability is commonly believed to be the karmic result of immorality.

Yeboah hopes to become a member of the Ghana Parliament one day. In the meantime, he's married -- to a nondisabled Ghanaian woman, which is apparently a feat of disability acceptance in itself due to cultural stigmas -- and has a daughter. The film fails to show these last and most ordinary achievements in his life, but Yeboah's story shines through any directorial shortcomings to show what a single person can achieve when he is taught his own self-worth.

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* IIRC, Macy appeared on Oprah after the release of Door to Door, his award-winning made-for-tv true story of Bill Porter, a man with cerebral palsy who confounded all expectations by becoming a top door-to-door salesman. Macy had become a national ambassador for United Cerebral Palsy and when prompted by Oprah about his volunteer position he spoke eloquently and at length specifically about disability prejudice and discrimination.

Cross-posted at Echidne of the Snakes

Anniversary -- Escaping institutionalization

This Tuesday, March 6, was the one-year anniversary of my returning home from my four-month hospital stay. What makes the date so important is that my insurance company tried very hard to have me sent to a nursing home after I'd been at the rehab hospital for two months. I was progressing with occupational and physical rehab, I was attempting to wean off the vent, and I was learning how to speak with the trach and ventilator. I was gaining weight -- up to 92 pounds from my low of 75 when I entered the ICU in November 2005.

Had the insurance company gotten it's way, I would have gone to the one nursing home in the entire Twin Cities they considered "in network" and accepting of vent-dependent clients. And I firmly believe that would have led to my death -- quite possibly in this past year.

From the beginning of my medical crisis, my parents and I had talked about how we would try our best to adapt to my changing needs -- the increased need for skilled assistance, the steep learning curve for the vent, trach and feeding tube, the medical bills threatening their financial security as well as mine. The insurance company assigned me a case worker. The hospital social workers helped us begin to navigate the system for state and federal aid. I signed over the title of my van to my folks, an act that terrified me because of how necessary and tenuous being asset-less appeared to my survival. (It's back in my name now, but at the time it was suggested as necessary.)

While I was busy at the rehab center with the minutiae of movement and breath, my parents were working to secure a home health agency and nursing care with state funding approval. Then, one morning, my Mom got a call from that insurance company case worker.

"I've got good news!" she said. "We're moving Kay to a nursing home that's closer to you so you won't have to drive so far to see her! The home is sending someone to assess Kay today!"

This is a person who knew we were working hard to get nursing coverage for me at home. And I don't know how long the insurance company had been planning to drop this bomb, but because I didn't have a telephone in my room (or, really, the ability to speak into it), she was basically telling my Mom the bomb was about to be dropped on me. My parents say they raced to the hospital -- a 90-minute drive -- to keep it from looking like they had decided to ambush and abandon me.

When I was in ICU at first, I was intubated with the breathing tube in my mouth and down my throat. For various reasons, including the Thanksgiving holiday and some scheduling around it, I was intubated for about three weeks and conscious for all but the first couple days before surgery to install the trach at my neck. Intubation by mouth is very painful on the jaw and tender throat. And frightening. During that time -- November 2005 -- I shifted emotionally from wishing I could die and stop the misery, being overwhelmed by the small kindnesses of people and the company of friends and family, and compulsively wondering if this was leading to the end. I was sure it was not, despite my on-and-off despair. I've had pneumonias that felt very deadly and like I might be rattling my way toward death, but this felt like a living transition that I would survive.

And yet, three months later, after the hardest-working, most character-building time of my life, when my parents rushed to my room at the rehab hospital to tell me the insurance company was planning on sending me to a nursing home, my absolute first private thought was, "So this is going to kill me after all."

That's not just drama. I've made a study of how institutionalization leads to the abuse and death of disabled (and elderly) folks -- especially those using ventilators. Like we feminists follow the state of reproductive choice, I have followed the freedoms and lack of them for disabled people in institutions. Abuse and death in institutions has been a theme, along with the basic immorality of warehousing people, in small activist publications like Mouth and Ragged Edge for decades.

As details about this particular facility I was slated to enter became known, it became clear to everyone I talked to at the rehab hospital that being there would likely endanger my health and most definitely halt and reverse specifics of the work I'd done in physical therapy.

As it happened, the one person at that nursing home responsible for assessing incoming inmates was away on a holiday in the tropics and did not visit me that day the insurance company woman said he would. My parents were able to break the news to me, and there would be a weekend reprieve. We learned more about the home in that time -- this home that none of the doctors, nurses, therapists, or RTs that I quizzed at the rehab hospital had any familiarity with. They couldn't recall sending any other patient there, though that was possibly due to a name change, I don't know.

Here are some things I learned about this nursing home I narrowly escaped being sent to, from my parents' on-site tour and my doctors' communication with the facility:

There was a vent wing with about a dozen people there using ventilators to breathe. When my parents visited in mid-afternoon, all these people that they saw through open doors were stuck in their beds.

I was slated for the last room at the end of the hall, as far as you can get from supervision and assistance.

There was no internet access anywhere available to inmates. And no TVs in the rooms. Patients were expected to provide their own if they wanted something to do while immobile in their beds. I suppose this is true of most nursing homes? I don't know.

There was a dining room, but when my Mom asked the home rep if I would be eating in it, she was told it was doubtful. Because of the vent, the woman said, unless I had someone of my own to assist me, I would be staying in my room for meals, and likely for everything else.

Much of the population was warehoused homeless people, probably mentally ill as well as formerly indigent, whom no other place would accept. My parents deduced that a young woman (okay, middle-aged) who cannot walk and is stuck in bed on a ventilator at the end of a long hallway without the power of speech might be vulnerable to physical attacks from mobile, minimally-supervised people with mental issues of their own.

There were RTs (respiratory therapists) on staff but all of them were off-duty every day from 3 p.m. until the next morning. (With my body adjusting to the trach and vent at that time, I was experiencing frequent "mucus plugs" that completely blocked off my airway and required immediate suction relief -- all of these events occurred for me at rehab during evening and night times. More than a dozen times I experienced these plugs, which often hit without notice. Once, I blacked out completely while the RT worked to clear my airway -- and this occurred with a night-duty RT who came immediately to my vent alarm from a desk just a few yards from my bed.*)

The ventilator I would be required to use would not allow for any weaning and would not be portable on my scooter.

I might not be allowed to use my own scooter, which in any case, would be of limited utility without a portable vent.

There was no physical therapy available to help me maintain or increase my strength, which I'd been working on daily to rebuild.

This was the only "in network" option my insurance company was giving me. Without home nursing assistance yet in place, the rehab hospital would not allow me to go home, but the insurance company expected this place would be suitable. My parents were so afraid for my safety and health that they were planning to take turns sleeping in the nursing home room with me, fighting whatever policies might prevent even that. The home care agency we were working with was racing to hire nurses, but expected it would take three weeks to a month.

It did take a month to get the nurses for home care -- and even then, only partial coverage. In the meantime my respiratory health took a little dip, likely because I was crying quite a bit from all this. Concerned, the rehab hospital doctors would not release me to the nursing home, the assessment dude never showed up, and one day, quite suddenly, the insurance company called the social worker and completely relented with the institutionalization plan. I'm sure this is because I had people: my parents to speak for me when I literally could not and wouldn't have had the energy or heart anyway, doctors and RTs who I was awake and conscious enough to build a relationship with so that they perhaps fought a little harder for me in a battle they faced with insurance companies daily. I had resources to keep me from that nursing home I believe would have caused my death. Other people do not.

This one-year anniversary reminds me of how very afraid I was to leave the hospital and the trained professionals behind for my parents' newly-learned suctioning skills and nurses we newbies would have to train. I'm home and happy, though unemployed and baffled as to how anyone who has to manage full-time assistance does anything else useful with their time. I'm hoping to figure that out in the coming year. This is a bittersweet anniversary to celebrate when I understand how very very lucky I am, and how the story is much different for other people who do end up in nursing homes and other institutions.

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* Because of medication, adjustment to the vent, and a lowered cuff that prevents sudden total blockage, plugs are not an emergency I have had for about ten months now. This is the result of a lot of hard work and vigilance on my part. Conscious, alert, and in charge of my own health care here at home, I can weigh all the factors and adjust medication that prevents plugs, refuse meds if I don't need or want them, ask for suction, request more or less water in my cuff -- all without being institutionally "noncompliant" or having something decided without my input or consent. Until I was able to verbally express these wishes, my written communication was respected and "heard" by people who my family and I were able to assure cared about my preferences.

Cross-posted at Echidne of the Snakes. Check for more comments and discussion over there.

International Day of Disabled 2006

December 3 -- today -- is the International Day for Disabled Persons as declared by the United Nations some years ago. At the very least, the declaration obligates countries and organizations around the world to take note once a year of the state of disabled persons in their midst. Here's a sample of that news:

From The Jerusalem Post: Disabled Arabs suffer extreme difficulties. Most notably, the women, of course:

Arab males with disabilities face extreme difficulties, the study reported, but women with disabilities are socially isolated, unable to marry and, in many cases, confined to the home by their own sense of shame, social pressure and the family's reluctance to be seen with them in public.

"Some of the women with disabilities are illiterate, which limits their access to information and increases their dependence on relatives.

Among Beduin women in the Negev who have disabilities, the situation is even bleaker," said the report.

"The situation with disabled women in the Arab sector disturbed me every time it came up," Avital Sandler-Loeff, who authored the report along with Yiffat Shahak, told The Jerusalem Post in an interview. "Women with disabilities are forced to stay at home and are really not involved at all in the community," she said.

A little less balanced report (italics mine):

Arab children more likely to be disabled

The proportion of children in Israel's Arab community who are blind, deaf or have physical or developmental disabilities is double that of the Jewish population, according to the first report on disabilities in the Arab population in Israel. The report is being released today by the Joint Distribution Committee-Israel in honor of International Day for Persons with Disabilities today. The authors attribute the high incidence of disability to the high rate of inbreeding, genetic diseases, childbearing at an advanced age and a high incidence of accidents.

"Inhuman treatment" of the disabled in rural India:

Girdher says, cases of physical abuse of the disabled are rampant in rural area citing cases where a visually challenged girl was raped in Dahod and another woman with visual impairment in the same district was rejected by her physically challenged fiance.

Also, chaining physically challenged people is common in Unjha and Makhtupur, says Girdher adding that in some other areas like Chandroda, polio patients are called “mastans” and revered by family with the belief that the person has absorbed all the ill fate of the family through his disability. “During our study, we have also come across a number of mentally challenged people who have been abandoned by families near Piradata Mazar in Mehsana district.” These are made to take mud baths by the people of the mazaar, he says. “After a thorough situation assessment in districts of Gandhinagar, Anand, Banaskantha, Sabarkantha, Mehsana, Anand, Baroda, Katch and Surendranagar, we realised that while on one hand there is very low level of awareness regarding issues pertaining to disability among both the civil society and the health workers, on the other hand, stigma attached to disability is proving a great hindrance in their rehabilitation. For many, disability is only orthopaedic. They are not aware of other forms,” he says.

Angola's Social Welfare minister pledges to help disabled folks reach fuller partnership in society. This could be a news report from the U.S. or anywhere, but it's not easy to find Angolan news on the disabled. Also, Malta.

In Islamabad, Pakistan, a reporter gamely notes that this year's International Day theme is "E-Accessibility," which is certainly important for any person to be part of this global society, but it also highlights the enormous disparities when life is so direly about survival for so many disabled people around the world. Likewise, in Kuala Lumpur, Malaysia:

E-Accessibility is the theme for IDDP 2006 but here in Malaysia, if the disabled simply have basic accessibility, they will be genuinely delighted and the nation will be one step closer to eventually being a developed country.

A Kuwaiti report on governmental observance of the day reveals typical tensions between focus on charity and a more evolved understanding of what disabled people need from their communities.

In a poignant report on war-caused brutalities and disability in Sierra Leone, a Reuters report shows the connection between violence and disenfranchisement from society:

When Bambay Sawaneh came face to face with the man who had ordered rebel fighters to cut off both his forearms three years earlier, he asked a baying crowd not to lynch his attacker.

"I told the people if they kill him it will not make my hands come back," said Sawaneh, who recognised the man during a physiotherapy session to help him use prosthetic limbs in Sierra Leone's capital, Freetown.

In what became a trade-mark mutilation during the country's 1991-2002 war, the rebels first tried to cut off the then 15-year-old Sawaneh's arms with an axe. But the blade was too blunt to cut through the flesh and bone, so they resorted to using cutlasses -- local parlance for machetes.

"I have forgiven him," Sawaneh, now 22, said of the man he once swore to kill, wiping sweat from his brow with his left stump after a bible class in the steamy coastal city.

Thousands like Sawaneh have learned to come to terms with the horrific acts inflicted on them and their families by the notorious Revolutionary United Front rebels, who financed their campaign of murder, rape and mutilation partly by the trade in gems that inspired Blood Diamond, starring Leonardo DiCaprio.

The Christian magazine Inspire talks about some success in changing attitudes in the Middle East and North Africa.

In Goa, India, an article on how attitudes yet need to change.

The Palestine News Network reports on the toll the ongoing struggle with the state of Israel puts on people living in the Gaza Strip:

And one is hard pressed to find a Palestinian man without a limp, or a bullet or shrapnel lodged somewhere in his body, or an arm that was broken and pushed back into the socket without medical care. And then there are the generation whose bodies were stiffened and twisted in their formative years. Although functional, there are those who after spending their “seventeenth year in a cupboard” in Israeli prison as an Aida Refugee Camp man did, do not move properly and are in constant discomfort.

The Rehabilitation Sector of the Union of NGOs issued its annual statement on Saturday. “The disabled Palestinians affected by such circumstances is the largest of all other sectors. More than 6,000 of the Palestinians injured during this Intifada are suffering from a disability.”

Lest we think the disability divide is mainly in developing countries, Canada's Toronto Star reports on "frightening gaps" in the quest to make disabled people more equal in society:

This week, the Ontario Association of Food Banks reported that people with disabilities, who represent 12.4 per cent of Canada's population, make up more than 20 per cent of those who need their services.

Not surprising perhaps when you consider that the employment rate for people with disabilities is about half that of their non-disabled peers, another frightening gap.

An excellent report from Jakarta, Indonesia, discusses the link between disability and poverty:

The World Bank estimates that 10-12 percent of the world's population, or over 600 million people, have some form of disability. Some 80 percent of them are living in poor countries (WHO, 2006).

People with disabilities are highly over-represented among the poor; about 82 percent of them live below the poverty line. They have varying access to networks and resources and economic power. Their disabilities don't only affect them, but also their families, social networks and their general environment.

Poverty is considered both a cause and a consequence of disability. Poverty is a cause of disability because the poor often lack resources to prevent malnutrition, and access to adequate health services that may prevent disabilities. Poverty is a consequence of disability since people with disabilities often lack access to education, health services and income generating activities and are often deprived of social and economic rights. It is estimated that only 2 percent of people with disabilities enjoy adequate access to basic needs. These factors contribute to high levels of vulnerability and social exclusion, and preserve the vicious circle between disability, vulnerability and poverty.

In Beirut, Lebanon, planned celebrations were cancelled because of the "volatile situation there," but discussion of the social vs. the medical model of disability was nevertheless discussed, as well as the war's impact on disability:

The World Health Organization asserts that 10 percent of Lebanese are disabled. Additionally, 83 percent of all disabled are unemployed - almost five times more than the able-bodied rate. Six hundred were disabled in this past summer's war, and since the cessation of hostilities cluster bombs have disabled a further 150 civilians and continue to mutilate the limbs of more.

"Is it too much to ask to go to school, work and live a dignified life?" Laqqis asks. "I know that there are too many problems to worry about in the government but we shouldn't always be pushed to the end."

Disabled folks participated in a Lebanese marathon Sunday and said it was an example of social equality that they were part of the event.

In Cyprus, disabled people staged a protest to demand their rights:

The Cyprus Paraplegic Organisation yesterday held a demonstration outside the House of Representatives in protest against what they say is the failure of the state to recognise their rights and needs.

“Instead of celebrating International Day of Disabled Persons on December 3, we have decided this year to go ahead with this symbolic demonstration to express our displeasure at the way people with heavy disabilities are treated by the government and the Parliament,” read an announcement issued by the Organisation.

According to the announcement, Parliament had rejected all of the organisation’s suggestions during the recent alteration of the Law for Public Benefits and Services, while the government has repeatedly ignored disabled people’s problems.

As for the United States, I couldn't find any actual formal celebrations or reports about this being a UN-declared day for disabled persons. Just a governmental press release sent out in advance.

Until every single penny is gone

Update: Liz deleted her blog Granny Gets a Vibrator, so I believe the dead links to it below represent lost writings, but her new blog is As The Tumor Turns. For those who don't understand the now-missing reference: Brenda was the tumor's name, and she appears to have been beaten into submission/remission.

The fantastic Liz at Granny Gets a Vibrator has been blogging and slogging her way through a recent cancer diagnosis and all the medical, financial and existential fears that travel in it's tumor-swollen baggage. (A quick and violent death to Brenda!) I can't say enough good things about her writing and I wish her all the strength and luck she needs for this week and until this is over.

The medical worries are bad enough, but I keep thinking back to Liz's recent rant about the financial concerns a medical crisis creates and adding her rants to the ones I work through daily in my head. (I've written just a little about them here.) Here's Liz:

The system at the "charity" hospital is a total disaster, a massive fuckup, a guaranteed death sentence. Not just for me, but for 4,000 poor uninsured people who desperately need health care every month. I'm slipping through the system's cracks: medically, there's no continuity, I never see the same person twice, no one can figure out what's going on, locate my records, or find out which doctor said what or why. And I'm slipping through the cracks financially: because I have a small amount of money left in my IRA, my "liquid assets" disqualify me from receiving free care, until every single penny I have is gone. Which at this rate could be in about three weeks....

And the struggle to figure out how to deal with the financial monstrosity. I deeply appreciate the Paypal offers, but you know, we're talking about maybe $60,000 a month? Probably more. Astronomical. Impossible. Ruinous.

I'm not going into this all detail out of self-pity, or to whine about how it's so unfair to me. This situation is not just about me. There are millions of people out there in the same sinking boat I'm in, with nowhere to turn. It's just unimaginably horrible. I sat there and watched several hundred such people suffer today, and most of them looked completely defeated, thoroughly resigned. The tired dead-eyed hopelessness in their faces still haunts me.

It is impossible and ruinous. The health care system in America is just broken. If Bush and the international gratitude his actions create don't kill us all, the health care crisis will destroy us economically as a country. And our independence one by one.

I was in hospital four months. Three different hospitals, actually. I'm unemployed now, but because I was insured as a baby before my impairments were evident or serious, and because I still ride on that insurance through my parents, who finance it, I have excellent insurance coverage.

Still. This hospital stay forced me to activate the full Medicare benefits I qualify for and apply for state aid for the disabled. I have no idea of the full cost of my illness and recovery, nevermind the current care I receive at home. The hospital bills exceed a half million, I know. But the paperwork goes round and round -- employment of the circulators probably costs half what I owe. Medicare and my insurance company send me reports, the hospitals send me totals of various things, then they all request the others pay their share, and they all send me updates on how that's working out. It usually isn't working out, so it's a self-correcting program where we go round again. I'm not sure anything has yet been paid.

There are the inevitable errors that slow this idiotic process down. At one point my medical supplier billed my insurance company, and the insurance company paid but inexplicably sent the check to some random trucking company with a slightly similar name. The trucking company cashed the check, which was a little over 20K. (Well, wouldn't you?) The supply company demanded the money they never got, the insurance company insisted they'd paid it. Someone demanded a cancelled check. Someone refused. It got kind of pissy.

There was mention of going to court, where, of course, I would get named as the delinquent defendant. I swear this is all true. Meanwhile, I'm not speaking because I'm a lazy ass vent user and, frankly, I want some alone time from all this attention and being able to legitimately claim I can't speak comes in quite handy sometimes. So, my father spent a week or two on hold. And because he has a talent for this, he eventually made someone see reason and they all grew up and fought this out without my needing to pay legal fees. I don't know if the supply company actually got paid or if they agreed to add that bill to the merry-go-round again.

There was discussion while I was in the rehab hospital about whether or not my parents would need to spend down their assets to nothing so that I could receive the continuing care I need at home. My retired parents who have had the luck and good sense to cover their own aging butts as best as any upper-middle class couple in this broken system can were told they might need to give up everything so their 37-year-old daughter could live with them and get daily care. That's a rockin' deal for them.

The details of why this needed to be considered involve how I almost ended up in a very scary nursing home. I'll write on that another day. A hospital social worker helped us navigate the system so that only I need to be poor. Currently I do live with my parents and have 24-hour nursing care because of the ventilator and the laws attaching to receiving aid at home.

In order to get funding for home care while using a vent, it has to be qualified nurses rather than just anyone trained as a personal assistant. Though, of course, my parents learned everything the nurses need to know for my daily care from the rehab hospital staff and they are allowed to help. Because this country has a nursing shortage, in fact, my parents were on duty half the hours of every week (84 hours shared between them, sometimes 48 at a stretch) for about a month before all my nurses were found and hired by the agency required to handle this for me. If I had enough family to be present round-the-clock without pay, no one would care they didn't have medical degrees. (More on that, too, another day.)

In order to keep the funding that provides this constant professional care, I have to have less than $3,000 in total assets to my name. Constantly. Forever. I get a disability benefit each month. I'm not allowed to pay my parents rent and in these first few months I haven't been out too much. So, ludicrous as it seems, it's been a challenge to maintain my total poverty. I can't invest. I pay for what I can around the house. And I do what is called a "spend down."

Many disabled do it or something similar. My college roommate used to get her personal attendant funds and college funding in cash so it wouldn't show in her financial records at the bank. And she was wicked generous with birthdays and Christmas because she couldn't use any cash to, you know, build a future for herself.

One nurse told me of a man she used to help who had his home nursing cancelled because he had too much in the bank. He called the home health agency back a day or two later, said he'd been on a spending spree and they could come back now. He was poor again.

If I didn't live with my parents, almost every cent of my disability benefit would go toward food and rent -- or maybe just rent. I would be among the poorest of the poor at $760/month, or more likely be in that nursing home with no autonomy.

Anyone who could get hit by a bus tomorrow and need a ventilator would face all of this. Or anyone who has a tumor. Or is a soldier in the war. Because the system is broken, we're all just that close to losing any hope of economic independence. Or life outside of an institution. Astronomical. Impossible. Ruinous. And a lurking threat.

Crossposted at Echidne of the Snakes
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