Don't join Yaari

If you got an email from me to join something called Yaari, please ignore it. I got that same email, explored it and gave out a bit too much info before bailing out myself. Yet it seems the site has spammed everyone in my email files (like, a week after the fact) despite me expressly saying not to do so and having changed my passwords. Sorry for the trouble. And thanks to those who emailed me to ask what was up, otherwise I would not have known this was happening.

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.

Mail with Mom

Recently, MissCripChick wrote a blog letter to her Mom and Amanda of Ballastexistenz received an email from hers.

MissCripChick writes, in part:

please do not take this as sarcasm, but i just wanted to take a moment and let you know how much i appreciate the fact that you haven’t tried to murder me, drug me, take me off my ventilator, withhold food, lock me in the garage, abuse me, harvest my organs, or rip my utereus [girl parts] out over the years.

And, lest her thanks be seen as unnecessary, Amanda describes the email her Mom really did send to her:

My mother wrote to me a few weeks ago to make sure I knew that she had never, ever, once, thought of killing me.

It was one of those surreal moments where I sat there and thought, “If I were non-autistic, non-disabled, I doubt she’d have felt the need to reassure me of something that should have been a given. And I think a non-disabled person would have been puzzled to get such a message out of the blue. I wish I was more puzzled as to why.”

The above letters are one response to the belief that the murders and resulting media coverage of disabled children are isolated, tragic events rather than an epidemic of prejudice and devaluation. They illustrate the effect the murders of Katie McCarron and Lexus Fuller and Tracy Latimer and Ulysses Stable and Christopher DeGroot and so many other children have on all families with disabled children.

As Amanda says:

What on earth kind of message makes parents believe they actually have to reassure their own children that really, seriously, they never even once considered killing us, and that really, seriously, we were wanted?

I can only guess it’s some toxic mix of the constant stream of murders and the messages that the press and various autism charities send out about the supposed frequency and normalcy of such thoughts. This isn’t support. Anything that makes my parents, and doubtless others, question such fundamental things about their relationship to their own children, and seriously believe I might think they’d had these thoughts, is not in any way support.

The next Ashley X

Her name is Katie Thorpe. Other bloggers have been covering this latest story. Penny has the link collection here. Let her know if you got a link to add to the list.

I've said all I plan to say for the time being in comments at Feministe, mainly in response to the notice that disabled people weren't contributing to that thread. Here's a repeat of my comment over there:

There are a number of us disabled bloggers and blog readers around who weigh in here at Feministe occasionally. Many of us (not me this time) have been writing about this case during this past week. I’m sitting out this round (of debating the specifics of the UK case) for the reasons I specified last January when the Ashley X case came to attention, summed up beautifully by Brownfemipower back then:

Maybe, just maybe, bloggers who are disabled don’t really want to discuss shit like this over and over and over again–especially when people are not just discussing their right to access or something like that (where the presumption of humanity deserving of life is at least present), but are actually challenging disabled peoples very right to live as autonomous respected human beings. Maybe bloggers who are disabled really don’t feel like debating whether or not they are “burdens” worthy of extreme forms of violence just to suit able-bodied people. Maybe they aren’t interested in debating whether or not they have a right to be alive.

The typical response to what BFP says there is “But disabled people don’t know the burden of caring for disabled people.” Or “But the girl in question is much more disabled than these disabled people arguing against the treatment.” When exactly do our voices and experiences become relevant? I always forget when that’s supposed to kick in?

One final thing: It’s good to remember that in the case of Ashley X, the hospital broke the law by not obtaining a court order for the surgery — one step in the process meant to insure her interests are considered separate from her caregivers, specifically with regard to a disabled person’s reproductive rights. Also, though it wasn’t revealed until a full month after the media storm, the hospital ethics committee was torn on this case and in the absence of a consensus, they granted the parents’ wishes. That decision (or lack of one) occurred without any sort of disability rights perspective on the ethics committee.

Remake of the Ramones' song

Direct link to YouTube video here. Visual description: This is a video remake of the classic Ramones song "I Wanna be Sedated" sung and performed by dozens of elderly residents of a nursing home, it appears. In day rooms and hallways, using wheelchairs and walkers, elderly men and women sing or holler the lyrics raucously together directly to the camera. Someone plays a guitar and another man bangs on a piano in the background. One guy with white tufts of hair above each ear and eyeglasses with one lens patched over with tape plays a harmonica. The lyrics:

Twenty-twenty-twenty four hours to go I wanna be sedated
Nothin' to do and no where to go-o-oh I wanna be sedated
Just get me to the airport put me on a plane
Hurry hurry hurry before I go insane
I can't control my fingers I can't control my brain
Oh no no no no no
Twenty-twenty-twenty four hours to go....
Just put me in a wheelchair, get me on a plane
Hurry hurry hurry before I go insane
I can't control my fingers I can't control my brain
Oh no no no no no
Twenty-twenty-twenty four hours to go I wanna be sedated
Nothin' to do and no where to go-o-o I wanna be sedated
Just put me in a wheelchair get me to the show
Hurry hurry hurry before I go loco
I can't control my fingers I can't control my toes
Oh no no no no no
Twenty-twenty-twenty four hours to go...
Just put me in a wheelchair...
Ba-ba-bamp-ba ba-ba-ba-bamp-ba I wanna be sedated
Ba-ba-bamp-ba ba-ba-ba-bamp-ba I wanna be sedated
Ba-ba-bamp-ba ba-ba-ba-bamp-ba I wanna be sedated
Ba-ba-bamp-ba ba-ba-ba-bamp-ba I wanna be sedated

Punk music sung with irony by seniors. This just makes me so indescribably happy!

The Ramones themselves in a much duller video performance here.

h/t to Changing Aging Blog

Update: The performance is by the Young at Heart Chorus. Here are links to YouTube videos of performances and staged music videos of "Staying Alive", "Road to Nowhere" and Coldplay's "Fix You".

Deaf Karaoke with David Armand

Direct link to YouTube video here. This is a live performance of the song "Torn" by comedian David Armand of The Hollow Men with singer Natalie Imbruglia at the 2006 Secret Policemen's Ball for Amnesty International.

Visual description: Armand is on-stage at a live event acting out the lyrics to the pop song "Torn" (lyrics here). The performance looks like sign language but has been described as "mime style interpretive dance". I don't know sign, so I don't know if any of the performance uses actual sign language, but much of it is puns and it's cleverly easy to follow for a hearing person: Armand holds up four fingers for the word "for", mimes reeling in a fish for the word "real", and mimes a magic act for the word "illusion". Halfway through this performance, Imbruglia appears on-stage singing and eventually joins him in the gestures. There's a wordless slide guitar part toward the end of the song where Armand and Imbruglia mime playing the guitar.

Is this cultural appropriation? A comedy act that has nothing to do with deafness and Deaf culture? Or is it cultural cross-over that might be useful to the Deaf, Deaf theater, and communication with Deaf folks?

Here's a different mime performance by Armand, to Paul Young's 1980s hit "Wherever I Lay My Hat, That's My Home"

h/t to Group News Blog

More Profit, Less Nursing

A recent NYT article on nursing homes illustrates how for-profit institutions can be dangerous for inmates of those homes:

The typical nursing home acquired by a large investment company before 2006 scored worse than national rates in 12 of 14 indicators that regulators use to track ailments of long-term residents. Those ailments include bedsores and easily preventable infections, as well as the need to be restrained. Before they were acquired by private investors, many of those homes scored at or above national averages in similar measurements.

In the past, residents' families often responded to such declines in care by suing, and regulators levied heavy fines against nursing home chains where understaffing led to lapses in care.

But private investment companies have made it very difficult for plaintiffs to succeed in court and for regulators to levy chainwide fines by creating complex corporate structures that obscure who controls their nursing homes.

By contrast, publicly owned nursing home chains are essentially required to disclose who controls their facilities in securities filings and other regulatory documents.

The Byzantine structures established at homes owned by private investment firms also make it harder for regulators to know if one company is responsible for multiple centers. And the structures help managers bypass rules that require them to report when they, in effect, pay themselves from programs like Medicare and Medicaid.

One of the demands of ADAPT at the recent sit-in at the Chicago headquarters of the American Medical Association (AMA) was that doctors divest themselves of financial interest in the nursing homes they recommend to their clients.

While there is a movement by aging Boomers gaining steam to make nursing and assisted living institutions into communities where people can go to live happily instead of going there to wither of neglect and die, a key factor in the injustices visited upon the people who end up in these homes is that continued institutionalization with minimal service and minimal care financially benefits someone else.

Back to the NYT article (italics mine):

Nurses are often residents' primary medical providers. In 2002, the Department of Health and Human Services said most nursing home residents needed at least 1.3 hours of care a day from a registered or licensed practical nurse. The average home was close to meeting that standard last year, according to data.

But homes owned by large investment companies typically provided only one hour of care a day, according to The Times's analysis of records collected by the Centers for Medicare and Medicaid Services.

For the most highly trained nurses, staffing was particularly low: Homes owned by large private investment firms provided one clinical registered nurse for every 20 residents, 35 percent below the national average, the analysis showed.

Regulators with state and federal health care agencies have cited those staffing deficiencies alongside some cases where residents died from accidental suffocations, injuries or other medical emergencies.

Federal and state regulators also said in interviews that such cuts help explain why serious quality-of-care deficiencies -- like moldy food and the restraining of residents for long periods or the administration of wrong medications -- rose at every large nursing home chain after it was acquired by a private investment group from 2000 to 2006, even as citations declined at many other homes and chains.

The typical number of serious health deficiencies cited by regulators last year was almost 19 percent higher at homes owned by large investment companies than the national average, according to analysis of Centers for Medicare and Medicaid Services records.

Behind those statistics is the isolation and suffering of many inmates, some of whom are disabled people with decades of life left to live. Living, if the care isn't too deadly, that is.

The History of My Shoes and the Evolution of Darwin's Theory

Disability is all about adaptation. That's not news to me. As performance artist Neil Marcus has said, "Disability is an art—an ingenious way to live." It's improv, sometimes all day long, when out in the public environment built primarily for nondisabled folks. I suspect that's not news to most disabled people either.

But Kenny Fries' newest book, The History of My Shoes and the Evolution of Darwin's Theory, combines musings on adaptation and the life and science of Charles Darwin with personal memoir and travel diary in unique and thoughtful ways. One thing Fries notes, particularly in regard to Darwin and his success as a scientist, is that interdependence (and sometimes dependence) is a natural part of human interaction and achievement:

Darwin's journey toward the theory of evolution itself was an act of reciprocity. His social situation, his finances, his family and friends, led to his collecting success, as well as to the publication of his theory. He used his family members in his experiments, and was assisted by neighbors. To arrive at the ideas at the core of On the Origin of Species, Darwin depended on the theories of others, such as Malthus, Lyell, and Wallace. Was Wallace's lack of social standing the reason he is not remembered today for cofounding evolutionary theory?

As man advanced in civilization, Darwin noted, small tribes became united into larger communities. Each individual began extending his social instincts toward all members of the tribe and eventually to members of the same nation, even though these people were personally unknown to him. Darwin concluded that once this point was reached, only artificial barriers prevented an individual's sympathies from extending to the members of all nations and races. (pp 163-4)

In terms of disability, interdependence (and dependence) has been relentlessly framed by society as weakness stemming from tragic imperfection. Yet in many other situations, interdependence is called "backup" or "teamwork." Collaboration. Ingenuity.

Fries explores the difference in perception that has traditionally determined that disability and the adaptions people invent in the face of impairments are uncool despite many disabled people's use and reliance on cool cutting edge technology:

"When you think disability, think zeitgeist," writes disabled journalist and news broadcaster John Hockenberry. Humanity's specifications "are back on the drawing board, and the disabled have a serious advantage in this conversation." We live in a time when the disabled are on the cutting edge of the social trend of the broader use of technology. Wireless technology and electronic gadgets are ubiquitous. The meaning of what it is to be human is wide open.

Who decides riding a motorcycle is cool whereas riding a wheelchair is not? Who decides drinking through a straw is sexy but breathing through a respirator is not? Who decides using a personal computer is natural but using a Braille 'n Speak, a variation of a PC, is not?

What we learn by adaptability may tell us more about the natural ways in which all of us can best flourish in an increasingly interdependent, complex, and confusing world. (p 180)

My favorite parts of The History of My Shoes are Fries' hikes up mountains, through Thailand, and around the Galapagos Islands, where he observes and relates what he sees to his life experiences with his own physical impairments. I think there's often the idea that creatures in nature evolve into or toward perfection and that the struggles they have to survive are due to life's cruel nature, environmental hardship and human interference. And that's all part of it on a grand scale. But the individual creatures Fries observes (or Darwin wrote about) persisted despite "imperfection." And adapted individually when they could. Just like us.

Both Simi Linton and Stephen Kuusisto have blogged about Fries' book, Linton adding her own thoughts on adaptation and Kuusisto (also quoted in a blurb on the book's back cover) looking at the poetry within Fries' prose.