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.

Resolutions for the new U.S. Congress

Pelosi was signed in as House Speaker today -- exciting and historic, that. I don't have much faith in her "100 hours" plan because the most important topics for this new Congress to address are too complicated to solve so quickly, but I do have hope for the year. Disability issues top the list of concerns Pelosi and the Democrats need to address:

1) Ending war and increasing peace in Iraq and Afghanistan -- From a purely economic perspective, responsible health care for injured American military personnel already endangers all of us:

More than 1.4 million U.S. soldiers have been deployed to Iraq and Afghanistan since late 2001, and about 26 percent have filed disability claims, according to raw data provided by the Department of Veterans Affairs. That percentage could grow as soldiers leave the armed forces.

''I see the whole thing as a mini-Medicare, another huge entitlement program, which is going to be sprawling out over the course of our lifetimes and our children's lifetimes,'' said Linda Bilmes, a Harvard University public finance professor and co-author of the Stiglitz study. "The big costs come when they get back . . . they stand a good chance of being really underfunded and not taken care of properly.''

Veterans groups worry that they'll be forced to compete with other government programs for funds. Not enough attention is being given to the future mental health and medical needs of Iraq and Afghanistan war vets, they say, especially given how those wars differ from previous ones.

This doesn't even count the much higher costs to Iraqis, with civilians dying from non-war-related, preventable health conditions now due to an almost total lack of access to medical care:

Zainab may be one of the 655,000 Iraqis who would be alive today if the Bush administration hadn't launched its criminally conceived and executed war. Violence caused most of the excess deaths. But 54,000 people died from non-violent causes, such as heart disease, cancer and chronic illness. They were victims of a health care system eviscerated by mismanagement, ill-placed priorities, corruption and civil war.

PetitPoussin comments on another tragic example here.

Congress' number one priority needs to be working honestly to end this conflict. Our job is to make them keep at it until it's done.

2) Universal healthcare and Medicare policy reform -- From the corrupt Republican Part D drug plan to federal requirements for proof of citizenship, recent reforms have complicated health care for thousands of Medicare recipients and shut others out altogether. Not to mention the over 46 million Americans who remain completely uninsured.

3) ADA Restoration Act -- Okay, this doesn't sound nearly as urgent as the two problems above -- and it isn't. Except that the war and increasing lack of health care contribute to the number of Americans with disabilities who must rely on the anti-discrimination law to remain a productive part of society. With Mark Foley and his vendetta against the ADA gone, Democrats have a chance to truly support disabled people by bolstering the ADA against further beatings from the Supreme Court.

House Democrat Steny Hoyer in 2004 speaking at the Tony Coelho Lecture in Disability Employment Law and Policy at the New York Law School:

When we wrote the ADA, we intentionally used a definition of disability that was broad -- borrowing an existing definition from the Rehabilitation Act of 1973.

We did this because the courts had generously interpreted this definition in the Rehabilitation Act. And, we thought using established language would help us avoid a potentially divisive political debate over the definition of "disabled."

Therefore, we could not have fathomed that people with diabetes, epilepsy, heart conditions, cancer and mental illnesses would have their ADA claims kicked out of court because, with medication, they would be considered too functional to meet the definition of "disabled." Nor could we have fathomed a situation where an individual may be considered too disabled by an employer to get a job, but not disabled enough by the courts to be protected by the ADA from discrimination.

The .pdf file of Hoyer's speech is locked from copying and pasting here, but I encourage you to follow the link and read the four principles he gives for the restoration of the ADA that Congressional action can provide. Briefly, these are 1) restate Congressional intent, 2) focus the law on discrimination and not details of an individual's disability, 3) disallow the courts' argument that disabled people must be saved from harming themselves, and 4) reassert that accommodation means finding solutions together rather than creating an adversarial relationship between employers and employees.

That's my short list of work for the new Congress to tackle. Not too much to ask.

Minimum wage for everybody -- yes, even the disabled

Arizona voters passed a new minimum wage that goes into effect this week and for the first time it will not exempt disabled workers from economic parity. As you might imagine, this disturbs many people who run business using sheltered workshops where pay is adjusted according to perceived differences in worker productivity.

According to the New Standard News:

Some 5,600 employers pay sub-minimum wages to about 424,000 workers across the country, according to a 2001 report from the US Government Accountability Office. More than half make less than $2.50 an hour.

Marta Russell, disability rights activist and author of Beyond Ramps (an excellent analysis of the economic ghetto created for disabled persons in a capitalist society), comments:

"‘Commensurate wage’ is an Orwellian tag for a law that legalizes inequality," said disability-rights activist and author Marta Russell. "It degrades the disabled laborer to equate his [or] her productive capacity as less than [that of] a non-disabled laborer and to not give them equal pay. Who is to say that the disabled worker’s labor is not equal to or more productive or profitable for their employers than the average couch potato’s?"

And:

"All laborers should be paid at least a minimum wage, and preferably a living wage," Russell, who uses a wheelchair, told TNS. "That is the only way to raise the disabled workers in question here to an equal economic level with non-disabled workers and lift some of them up out of a below-poverty-level existence. To be paid anything less is to further enslave the disabled worker more than workers in general are already enslaved."

And . . . she's back

No, not me.

I'm done with the family Christmas events but was gifted with several books, which I must read now so that I can trek to the bookstore and fondle some more.

Liz of Grannie Gets a Vibrator is back. She has been back for a while, actually, blogging as Lymphopo at her new site As The Tumor Turns. I'm honoring her with gimp status in my sidebar -- her recent medical adventures and the financial consequences of same certainly qualify her.

In my previous post, I link to my August 2006 post "Until every single penny is gone," which I wrote when inspired by how deftly Liz spoke about the financial dramas that accompany medical ones. So, update: The Liz referred to at the top of the penny post is this amazing diarist of tumordom. Drama. Adventure. Hairlessness. Cute canine-children wearing pants. It's all there, and I wanted to pass that news along before diving back into the dreamy prose of Allende's Inés Of My Soul.

Saturday Slumgullion #22 -- Best of 2006

This is the last slumgullion of 2006, and like Hugo Schwyzer, I've gathered a list of what I feel like are my best posts of the year. They aren't the ones that created the most discussion, by any means -- and in any case, whatever controversy I managed to create occurred when I crossposted over at Alas. The top five posts listed below seem to all be fairly personal accounts of my disability experience. Make what you will of the fact that I am proudest of them.

Also, go ahead and look over your own blogging of the past year and either leave a link to your "best of" list, or put the list in the comments here as part of my last slumgullion. Disability isn't a topic requirement.

August 13: Until every single penny is gone

September 4: The joys of impairment

September 25: "Is your life hard or super-hard?"

November 6: My déjà vu

December 7: Last year

Don't expect any original content on my blog here for at least a week.

Happy New Year!

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.

Get yer philanthropy on

Stumped for holiday gift giving ideas? Here are three organizations where you can donate in honor of someone you love:

Women for Women International -- Double your philanthropic power: Any donations given through the end of 2006 will be met by matching funds from someone who is apparently very rich. Or buy something from the org's bazaar. This is my one splurge for charity on my limited funds, and I've sponsored (and communicated with) several Afghan women in the past few years.

Heifer International -- Trapped in the hospital last holiday season, I found a surprising amount of joy in knowing bees, rabbits, and part of a goat had been provided for someone in my name. Not just a charity program, this is an educational system that gives communities ecologically appropriate opportunities, one family at a time.

Whirlwind Wheelchair International -- Ralf Hotchkiss has been working on designing wheelchairs for use by individuals in developing countries since the 1970s and his approach is different than other charities that seek to donate Western-made chairs. WWI teaches local disabled people in 45 countries to build their own wheelchairs, providing a continuing resource for the inevitable repairs all chairs eventually need. There are other organizations that build wheelchairs with plastic patio chairs attached to wheels or collect broken-down used chairs that may not suit the environments they're sent to. WWI considers each disabled individual, allows for custom needs, and creates economic opportunity (often for disabled women) instead of drowning the local market with free chairs. Here's the donation page.