Health care and non-compete agreements

Two years ago this week I got caught up in a legal dispute that briefly threatened my life. Obviously, I'm still alive, but a version of what happened to me could happen to anyone who consumes health care in America, so I figure people should know a little about it.

First, a little background on me: Because I have a sort of muscular dystrophy that weakens my diaphragm muscles, I've used a trach and ventilator to breathe for the past six years. Generally, lungs react to this artificial breathing set-up by making secretions that must be suctioned out of the lungs several times each day by a trained assistant using sterile gloves, a sterile catheter and a suction machine. I have 24-hour home care assistance for this and other help I need. But the most important thing my nurses do is to keep me breathing, put the circuit tubes between my trach and my vent back together if they fall apart, troubleshoot vent alarms and keep me from drowning in my own secretions. Life is better than you might think, but I have to have this care to keep breathing.

So. This dispute between the business partners of my vent-specializing home health care agency eventually led to my choosing the management of one set of partners over another, and that's when their legal dispute began to directly involve me. At that time my nurses all worked only with me within the agency. And I'm the only vent client my metro-area-based agency has had in my small town 60 miles outside of the Twin Cities. So my nurses followed the job and switched agencies with me in order to keep getting a paycheck. The agency I departed sued all my home care nurses for breach of a non-compete agreement (NCA). They also sought a temporary restraining order (TRO) to keep all my nurses from showing up at my house to work and, you know, keep me breathing.

Are you familiar with non-compete agreements? They are contracts between an employer and employee that restricts what the employee can do after they leave the employer for a different job. It's meant to protect an employer's business, client list, company secrets, etc. It requires the employer provide the employee "reasonable compensation" and typically restricts competing work within a geographical area for a set time.

It used to be that NCAs were mostly just for tech companies protecting research and development secrets, but increasingly these agreements are used by all kinds of businesses now, including for-profit health care businesses. What this means for ANY health care consumer is this: in the terms of an NCA all clients/patients are considered business assets. If your health care provider -- primary care physician, psychiatrist, obstetrician, oncologist, surgeon, dentist, etc. -- is suddenly barred from having you as a client because they change partnerships/clinics/employers and there's an NCA, you have no legal standing in a dispute between employer and employee. (Your provider could also suddenly lack access to your medical records, by the way -- one of many reasons you should always have copies of the most vital aspects of your medical history.) Need some sort of life-saving medical care and want the professional who knows your case? Your individual preference to stay with that medical professional likely will be no part of the legal discussion about financial harm to the employer and the livelihood of the employee.

An exception is if the legal discussion includes consideration of the "public welfare". For example, if the medical specialty of the employee in question is rare in your geographical area, an NCA may be disallowed or limited in scope to protect the public welfare. And some states disallow NCAs involving all physicians. But the "private welfare" of one individual client/patient is not "the public welfare" and your right as an individual to choose your health care provider may not be considered.

State policies vary wildly. All employment NCAs in California and North Dakota are disallowed. Florida very seriously favors employers over employees. Colorado, Delaware, Illinois and Kentucky disallow NCAs for all physicians, Tennessee and Texas protect some physicians, New Jersey disallows NCAs for psychologists, and Massachusetts disallows for physicians, nurses, psychologists and social workers.

I'm in Minnesota and my nurses being sued as third-party defendants for violation of their NCAs was considered by the court a viable part of a big messy case. I have a lot I could say about that messy case that complicated the lives of hard working people just trying to make a modest living by giving me knowledgeable and competent health care, but I'll try and stick to the topic of NCAs and health care here.

In my situation, I wrote an affidavit to the court about how my life would be endangered by the temporary restraining order (I needed both a lawyer and a notary public for that.) Then I showed up in court for the hearing when the TRO was being considered, even though -- and I find this both galling and very key to my whole point -- without me present, discussion of the TRO and my life-saving daily care would have gone on without me. Remember, as neither plaintiff or defendant in this case I had no legal right to participate. Although I'd like to believe the judge wouldn't have ruled on a TRO that interfered with life-saving medical care, I suspect it was my presence in the courtroom that day (with my vent huffing and puffing loudly) that got my former agency to immediately withdraw the request for the TRO. I do not know for sure if the judge ever read my affidavit.

After months and months, the full case settled and the question of the NCAs and their validity was never ruled on. There's a Minnesota Home Care Bill of Rights (MN statutes, section 144a.44.) that states that any client has "The right to choose freely among available providers and to change providers after services have begun, within limits of health insurance, medical assistance, or other health programs." The conflict between that statute and an NCA was likewise not adjudicated or even debated at the court dates I attended. In any case, those matters would have been addressed long after the TRO, if the TRO request hadn't been withdrawn.

Things might have turned out differently. I might not have had a nurse who showed me the complaint she was served. I might have been unable to read it and understand the immediate threat of the TRO. I might not have had access to a lawyer for the affidavit, or a ride to the courthouse to attend the day the TRO was brought before the judge. I might not have had such loyal, brave nurses who stuck with me through months of threats of financial penalties to each of them. I might not have had such an excellent home care agency to choose as I currently have and been stuck under the management of the agency that aimed these troubles at my nurses and me. But because consumers of health care are basically the collateral damage of NCAs, you don't hear many stories like mine.

In fact, Googling "non-compete and health care" offers mostly lawyers selling their expertise and almost nothing about the clients every enforced NCA against a health care provider must displace. There are a few cautionary tales besides mine, however.

In May 2010, Madeleine Baran of Minnesota Public Radio reported on the story of Nadine Parker and her two daughters. The eight- and ten-year-old girls had been seeing a mental health professional for about a year and were finally experiencing some progress with troubles including bedwetting and self-injury when an NCA came between them and the one counselor they had developed trust in. The only current remedy in Minnesota for these children's traumatic loss of support appears to be litigation.

[Mental health] advocates also said that the situation serves as a valuable lesson for mental health consumers. Many clients, they said, have no idea that their therapist, case manager or other provider would not be able to see them if the provider switched to a new agency.

"Realistically, the average client is not going to be thinking that far ahead," [Frederic] Reamer, [a national expert on social work ethics and one of the chief authors of the code of ethics for the National Association of Social Workers] said. "It's usually, 'I'm depressed. I need help. Can you help me?' [Not] 'Oh, by the way, do you work in a place that has a non-compete?'"

In the 2006 Kansas case Caring Hearts v. Hobley and Hardy, the appellate court upheld the original ruling in favor of the employer and against the defendant home care nurses. In reviewing the issue of "the public welfare" the appellate court stated (italics mine) that "there is no evidence that public welfare would be harmed by enforcement of the agreements. Hobley and Hardy did not present evidence at trial that the desires of any of their former patients would be thwarted if an injunction were issued and they were denied care that they specifically desired to receive from Hobley and Hardy. But even if there were such evidence, the issue is public welfare, not the private welfare of an individual patient."

Does the court imagine that the elderly clients do not care who provides their health care? The court doesn't consider it relevant.

So, how to avoid losing your oncologist halfway through your chemo treatments? How to keep the social worker your mentally troubled child is getting support from? How to hang on to the primary care physician who has seen you through the birth of all your children? There aren't any great answers unless you live in a state that has a statute disallowing NCAs.

But here's my list of things you can do to protect yourself as much as possible:

Ask your health care provider if they are bound by a non-compete agreement.
Ask if they have any plans to leave the business where they are currently employed.
If possible, choose a provider not bound by any NCA.
Repeat this process if and when you add any new health care provider to your life.
Repeat this process if and when your health care needs become more extensive or dire and continuity of care becomes more vital to your health.
Talk to your elected officials about protecting patient continuity of care by limiting or disallowing NCAs for medical professionals in your state.



Other stuff to know about NCAs:

The American Medical Association believes "restrictive covenants" to be unethical:

Covenants-not-to-compete restrict competition, disrupt continuity of care, and potentially deprive the public of medical services. The Council on Ethical and Judicial Affairs discourages any agreement which restricts the right of a physician to practice medicine for a specified period of time or in a specified area upon termination of an employment, partnership, or corporate agreement. Restrictive covenants are unethical if they are excessive in geographic scope or duration in the circumstances presented, or if they fail to make reasonable accommodation of patients’ choice of physician. (AMA Code of Medical Ethics, Opinion 9.02)

A physician in internal medicine in rural Idaho where doctors are scarce writes about taking a two-year sabbatical as the only reasonable way she can find to escape an NCA.

An academic paper on how NCAs affect the labor market for physicians. (If the math scares you, skip to page 27 for the research conclusions.) Spoiler: States most supportive of NCAs have fewer docs per capita.

In 2005, the Tennessee Supreme Court ruled that NCAs for physicians were against public policy and unenforceable. In response, the state legislature has repeatedly tinkered with statutes mostly having the effect of overruling that court decision and allowing NCAs for most physicians.

One researcher finds that NCAs often derail careers.

For a good primer on NCAs read the paper "The Law and Policy of Non-Compete Clauses in the United States and Their Implications" by University of Illinois professors Jay P. Kesan and Carol M. Hayes.

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.

"I had a choice, and I chose life. Does that make me pro-choice or pro-life"?

Tierney Temple Fairchild writes in the Washington Post about her ten-year-old daughter and what it means to her to "choose life":

I had a choice, and I chose life. Does that make me pro-choice or pro-life? Our political parties tell us we can't have it both ways. If I am pro-choice, then I must be for abortion. If I am pro-life, I may be lauded for a heroic choice when in fact none existed.

She continues:

In this economy, I must reflect on the circumstances that allowed us to make ordinary what some view as heroic. We were fortunate to have a health-care plan that covered Naia's medical bills. We were fortunate to have enough money to cover three weekly therapies carrying co-pays of $10 each. We were fortunate to have the educational backgrounds necessary to read research and advocate inclusive education for Naia. We were fortunate to have the lessons of discrimination and perseverance from another choice some also label heroic, interracial marriage.

Now, I look at my budding 10-year-old, and I see her beauty, poise and humor, not her disability. What I have learned is that we are not exceptionally burdened. Naia has some novel developmental and social challenges. Nevertheless, we and others are often struck by how typical she is, integrating with peers, reading on grade level and riding horses. All choices may not have the same result, but it is crucial that we all have the opportunity to make our own decisions.

If it's our choices that define us, choices that allow us to face down fears and lead us to our greatest achievements, what might come from taking those choices away?

Fairchild references Sarah Palin and her infant son Trig, but doesn't specifically mention this fact: Palin doesn't believe in allowing women this choice and neither does John McCain and the Republican party.

Oh happy day, tomorrow!

Vote if you haven't already.

h/t Patricia E. Bauer

Slumgullion #45

Yeah, I'm still here. I got new eyeglasses this weekend, and while it may take a few days to adjust to the bifocals (!) I hope to be spending less time squinting and more time online again.

In the meantime, this is the news I'm catching up on today:

"What happens when chronically ill kids grow up?" -- A June article in the Houston Press explains the gap in health care for disabled children who come of age. It's an important topic I haven't seen covered in such depth before, but, hello... the "first large generation of chronically ill pediatric patients to reach ­adulthood"? I'll be 40 in October, and I'm really tired of hearing how all the seriously disabled children before now died before needing adult health care. We're here. We've been here. A number of us have even been blogging online for quite some time. It's just that we're mostly invisible to the mainstream media.

"Girls parents and agency face charges in starvation" -- Danieal Kelly of Philadelphia was 14. She died in 2006 and the charges have just now been filed. Mark at The 19th Floor writes about Danieal and the grand jury indictment (pdf file with one very graphic photo) of nine people for her needless suffering and death.

"Immigrants facing deportation by U.S. hospitals" -- From a NYT series on how the government and others "compel illegal immigrants to leave the United States." Here's an excerpt:

Eight years ago, Mr. Jiménez, 35, an illegal immigrant working as a gardener in Stuart, Fla., suffered devastating injuries in a car crash with a drunken Floridian. A community hospital saved his life, twice, and, after failing to find a rehabilitation center willing to accept an uninsured patient, kept him as a ward for years at a cost of $1.5 million.

What happened next set the stage for a continuing legal battle with nationwide repercussions: Mr. Jiménez was deported — not by the federal government but by the hospital, Martin Memorial. After winning a state court order that would later be declared invalid, Martin Memorial leased an air ambulance for $30,000 and “forcibly returned him to his home country,” as one hospital administrator described it. . . .

Mr. Jiménez’s benchmark case exposes a little-known but apparently widespread practice. Many American hospitals are taking it upon themselves to repatriate seriously injured or ill immigrants because they cannot find nursing homes willing to accept them without insurance. Medicaid does not cover long-term care for illegal immigrants, or for newly arrived legal immigrants, creating a quandary for hospitals, which are obligated by federal regulation to arrange post-hospital care for patients who need it.

American immigration authorities play no role in these private repatriations, carried out by ambulance, air ambulance and commercial plane. Most hospitals say that they do not conduct cross-border transfers until patients are medically stable and that they arrange to deliver them into a physician’s care in their homeland. But the hospitals are operating in a void, without governmental assistance or oversight, leaving ample room for legal and ethical transgressions on both sides of the border.

Indeed, some advocates for immigrants see these repatriations as a kind of international patient dumping, with ambulances taking patients in the wrong direction, away from first-world hospitals to less-adequate care, if any.

“Repatriation is pretty much a death sentence in some of these cases,” said Dr. Steven Larson, an expert on migrant health and an emergency room physician at the Hospital of the University of Pennsylvania. “I’ve seen patients bundled onto the plane and out of the country, and once that person is out of sight, he’s out of mind.”

"Taking the long way around" -- From Oceanside, California, an example of how higher gas prices and budget cuts that have led to more crowded public transit is pushing wheelchair users off the bus. We'll be hearing more stories like this, I suspect.

"Her new role is fighting old label" -- Ms. Wheelchair America is interviewed by the Houston Chronicle. Beauty contests for disabled women have been covered here before, but I do like the approach to her new job that the current Ms. Wheelchair America, Michelle Colvard, seems to be taking. She says:

They're two main ways that the media portray women who have disabilities. It's either kind of passive, needing help, victim, suffering. You hear a lot of those words, wheelchair-bound, these negative-word connotations. ... On the other hand, women with disabilities who have done pretty well for themselves are put up on a pedestal. I think sometimes that's a bad thing, too.

Culture, chaos theory and choice

So, in my BADD post the other day, I explicitly noted the evil of our U.S. foreign policy in Iraq -- our war that, among other things, disables Iraqi children, many of whom will live their lives in a society with such a damaged infrastructure that their basic needs will never (not for one day) be well met. I know that some people trying to understand disability culture and the idea of impairments as not inherently tragic will be further confused by this. (No, being disabled is not a tragedy, yes, being disabled by an occupying army is an outrage and tragedy.)

The current discussion in comments at Alas, A Blog, started by WheelchairDancer's wonderful post "On Making Argument: Disability and Language" (also with a separate comment trajectory at her personal blog) struggles with this, or with several readers' inability to mesh together the ideas that while being or becoming disabled is not a choice, it is experienced by many people as normal or even filled with various human joys.

The confusion persists, I think, because disability is seen as this separate thing that happens, not as part of the whole spectrum of possible valid and ordinary life experiences. Maybe the breadth of what disability includes causes part of the confusion: we are the person born with spina bifida and the old fart losing his hearing, we are the person born to quadriplegia in a car crash and the cancer survivor who lost a limb while winning the battle, we're the child born with Down Syndrome and the dyslexic movie star, we're the institutionalized schizophrenic and the woman taking anti-depressants to keep moving through her busy day.

Pitting one life experience against another is ludicrous and unfair, of course, but in those comparisons I just made, the first examples are routinely seen as tragic and the second ones are all sometimes -- for better or worse -- seen as either common and ordinary or as triumphs of luck, strength and will. Neither characterization sums up the individual life or experience with disability. With adequate and just support, any disabled individual might lead an utterly ordinary life where his impairments are only one aspect of who he is. Or it might be the very thing that completely defines him. It might inspire him to amazing heights or leave him paralyzed with bitterness. (Yeah, note the metaphor there. Discuss, again, if you like.) People are different like that.

Two people can have the same job, with one hating it miserably and the other blithely content. Neighbors living side-by-side for sixty years can lead incredibly different lives. All life, but maybe especially disability, is chaos theory in action. Any outcome might be true.

The thing that makes the war in Iraq and the children it disables an outrage and tragedy is the degree of human choice. Someone somewhere (or many someones) makes a decision, and it leads to this event causing pain to other people. To value freedom and the individual means to value and support choice wherever possible and to be against human actions that limit freedom and choice of others. I don't find that contradictory to also embracing the disability experience as one that is in many ways fulfilling for many of us, even though few of us got here by choice and some of us have been injured at the hands of others.

Katie Jones and Deus ex machina

The story of Katie Jones has been circulating slowly on disability listservs and blogs since the December 9 article in the Chicago Tribune. FRIDA provided an early link to the story, and since then Crip Chick, Shiva, Bint, Trinity, Brownfemipower have all addressed aspects of Katie's story and the larger issues. Comments everywhere have been... illuminating.

I haven't written about this before now because these sorts of articles from the mainstream media -- this one involving children, parental control of a child's well-being, disability prejudice, personhood and consciousness, health care in the U.S., living with the aid of machines, "special needs" schooling, and "right-to-die" versus the right to not be coerced to die -- contain so much information that is either misleading, incomplete or biased that I can't think where to begin.

Katie Jones is a second-grader in Lake County, Illinois, who has severe cerebral palsy and whose parents have sent her to school with a DNR order (Do Not Resuscitate) prominently attached to the back of her wheelchair. Taking that much at face value, the implications for Katie, her parents, her young classmates and school employees are complex and profound.

Add to that some mind-boggling facts about both the case and the media coverage of it: The Tribune article portrays cerebral palsy as a terminal disease, and while I'm not well-versed on the very wide range of abilities and medical issues people with CP possess, none of the many people I have known personally have ever been about to drop dead. So that portrayal is dangerously and cruelly incomplete. The Tribune article doesn't discuss the fact that Katie apparently does communicate thoughts and feelings beyond those independently interpreted by people around her. You must dig to the caption of photo 4 at a sidebar link to even learn she is capable of expressing her feelings at will. And this, at the article's end:

Before the bus arrived, Beth Jones weaved a French braid into the school girl's long brown hair, while Allie [Katie's four-year-old sister] held up a feeding tube. A machine could do the job, but that makes group hugs difficult.

Besides, anything that beeps isn't allowed in the Jones house.

"When we took her home from the hospital, where there were so many machines, we made the no beeping rule," Beth Jones said.

The group hug part is completely untrue. I've had a feeding tube for two years now, and I can say with absolute certainty that there is nothing about attaching a thin plastic tube to the end of it and running that tube to a machine that makes it hard to hug or be physically close to people. It's actually less a problem for physical intimacy than an IV in the top of the hand would be, whether that IV is connected to a hanging bag or a machine. Feeding through the tube manually is a perfectly reasonable way to use the tube since basically this just entails using a giant syringe or holding the tube up and letting gravity allow nutrients to travel gently into the stomach, but attaching falsehood and phobia to machines that do this same task contributes to the pervasive ableist belief that people are better off dead than using medical technology for the long-term.

And the "no beeping rule"? There's the real reason for the DNR right there. Better dead than using a machine that might make some noise.

I understand machines are scary. I get that because I've needed to make my own adjustments to them and also because I see it in peoples' eyes every day. And I do understand people have different points at which they might choose not to live beyond, though I'll add that there seems to be little reflection upon or respect given to the people who live quite happily beyond those points.

I'd like to hear much much more about the Jones' "no beeping rule." Is it because Katie is terrified of the beeping? Does the beeping represent an identifiable point beyond which Katie's parents don't feel they can handle her care? Or is the beeping too public? Too intrusive? Too medical? Why is an alarm that can signal a problem that should be addressed juxtaposed against the myth that without machines Katie will die "peacefully" from choking or suffocation? Why is this type of beeping so forbidden in our technological age where cellphones and dozens of other machines chirp at each of us all day long?

It's not really the beeping, of course. And the answer to Trinity's question:

Now why is [info that Katie shares thoughts via a communication device] tucked away in the photoshoot and not right there by the article, which is written in a way that suggests she is not aware what is happening?

seems to be that it didn't seem relevant to the point of the article. Katie's consciousness and feelings were not important in an article about whether or not she lives or dies and whether or not she gets to go to school in the meantime. What her thoughts about all this might possibly be is not once pondered in the article.

Further discussion can also be found at Wrong Planet, an online forum for people with Asperger's Syndrome.

Cross-posted at Alas, A Blog

Robert Latimer denied parole

Yesterday, a Canadian parole board in a prison near Victoria denied day parole to Robert Latimer. Latimer is the Saskatchewan farmer serving a life sentence for the second-degree murder of his 12-year-old disabled daughter back in 1993.

Some facts: Tracy Latimer acquired cerebral palsy from oxygen deprivation at birth. She was unable to walk or talk and had seizures every day, but she could smile, laugh and cry. She went to school each day on a bus, she could communicate likes and dislikes. She recognized the people she loved. Tracy had several surgeries and was scheduled for a fourth on the day of her death. (The back surgery she had to correct scoliosis and the complication afterward of a steel bar migrating in her hip sound identical to my own Harrington rod surgery experiences.)

On October 24, 1993, Robert Latimer placed his daughter, Tracy, in the cab of his pickup truck, connected a hose to the exhaust, ran the hose in the vehicle's window and gassed his daughter to death. He hid the evidence and lied about her death until an autopsy revealed foul play. Then he confessed.

But he has never expressed remorse, which is why he was denied parole:

The parole board decided the 54-year-old Saskatchewan farmer had not developed any insight into his crime. Latimer insisted during his parole hearing Wednesday that killing Tracy was the right thing to do.

He remained unapologetic and angry at the legal system.

"The laws are not as important as Tracy was," he said.

"I still feel don't feel guilty because I still feel it was the best thing to do."

While there's always been a frightening and enraging degree of support for Latimer's actions (which, interestingly, played out while Susan Smith was simultaneously being castigated for the murder of her nondisabled children in the U.S.), much of the fervor has been about the mandatory sentencing that required him to serve at least ten years in prison. The Canadian Supreme Court overturned a lighter sentence that failed to follow sentencing guidelines. He's currently spent seven years in jail.

In an appeal to his conviction, Latimer contended that he "had the legal right to decide to commit suicide for his daughter by virtue of her complete lack of physical and intellectual abilities."

Grant Mitchell, a lawyer representing disability groups in relation to the case, said yesterday:

"I think it's really sad that he's still maintaining that he committed no crime ... that killing a member of his family was a private matter that the public had no business getting involved in. And I think it's particularly concerning that when he was asked by the Parole Board whether he would do the same thing if another member of his family were in distress, he said he wasn't sure what he would do."

I agree with Mitchell. More importantly, I agree with the guilty verdict that holds Latimer accountable for murdering his daughter. I am less certain how much time in prison is appropriate, but since Latimer reportedly wished to use his day parole to spend time furthering the cause of euthanasia, I'm content that he remains in jail.

Cross-posted at Alas, A Blog

Disability in China

A Chinese woman by the name of Wang Fang declined a disability pension despite being born with feet that face backwards. This is news in Britain, if only, perhaps, so the intriguing pictures of the 27-year-old waitress and resident of Chongqing could be presented for the public to view.

Apparently, Wang's visibly different feet automatically qualify her for a disability pension in China, but she's refused both the "disabled" identity and the cash.

"I can run faster than most of my friends and have a regular job as a waitress in the family restaurant," she says. "There is no reason to class me as disabled. I'm like everyone else - except of course that I put my shoes on backwards."

She does wear her shoes backwards, and it appears that while her feet do truly "face backwards" they are not literally attached backwards so much as bent back so that she walks on the tops of her feet. (Visual description of the two photos here: Wang stands at the edge of some stairs next to another woman in the first photo, the camera shooting from below to show Wang wearing red bootie slippers worn backwards, with the heels facing the camera. In the second pic, Wang sits on a bench next to a child -- probably her five-year-old son -- while the same woman from the first photo supports her outstretched legs at the ankles. Wang, grinning broadly, is slightly blurred in the background, with the focus in the foreground on her bare feet. They are, indeed, turned backwards, and also small, wide, swollen, deeply callused and her toenails appear visible where most of us have pads on the underside of our toes.)

It looks painful. And it's fascinating, of course. That's why the pictures-- and the story as a whole -- exist in Britain's Telegraph. The news is that she denies being disabled or needing government money. The photos are evidence that she is visibly deformed and "legitimately" disabled. This little feature is newsworthy because she's interesting to gawk at. The story is too short to inform readers of any details about who Wang really is or what might be her true circumstances or full reasons for turning down the pension.

What caused her feet to form this way? Is it common? Is there medical treatment that could have "normalized" her feet when she was a child? Would that have been helpful or completely unnecessary? Does she need special shoes or wear the big slippers all the time? Is there pain? Are there work accommodations that help her? If her waitressing job wasn't in her family's restaurant would she be employable in China? If her family didn't have her as a waitress, would the business fold under the simple strain of paying another employee? How would that disability pension compare to a waitress' paycheck? Would she have to give up her job (and paycheck, if the family business issues her one) if she accepted the pension? That last is almost certainly true.

We learn nothing of that, yet here is what the Telegraph makes sure to report:

Ms Wang, a mother to a five-year-old boy - whose feet face the more usual forwards - is not looking for sympathy, and is certainly no benefit scrounger.

Her son is normal and she is not one of those "benefit scroungers," you see.

Here are some basic facts about disability in China that might have enriched what is otherwise a "freak show" feature:

According to the China Disabled Persons' Federation there are about 83 million disabled Chinese out of the total population of over 1.3 billion people. That's less than seven percent. (By comparison, the 2000 U.S. Census (.pdf file) estimates that over 19 percent of non-institutionalized American citizens aged five and older have a disability. That's about 50 million and is considered by many to be a gross underestimate, depending on definition of disability used and how inclusive the count really is.)

Currently, only about seven percent of the one million disabled in China's capital, Beijing, are employed. Other statistics are similarly grim, though the Paralympics, the Olympic event for disabled people that directly follows the Olympics themselves, is coming as part of the required commitment a host city must provide for the international sport celebration. Great hopes are pinned on all the accompanying accessibility China must create in Beijing and the lasting improvements it may provide for disabled Chinese.

Disabled children sold into slavery to become street beggars for racketeers in Beijing are a significant social problem, and the coming Beijing Olympics likely mean that one way or another these young beggars will be removed from the public eye. Thus, Wang -- able to walk and run, employed, living with her family -- is likely among the "elite" disabled in China.

Still, it's likely that for purely financial reasons (never mind the social and cultural ones), Wang could not afford to accept disability status and the accompanying pension. Or, since she's able to walk, run and work, she shouldn't qualify at all for the pension, right? But then there'd be no story or reason to publish those photos.

h/t to Ruth at Wheelie Catholic

Cross-posted at Alas, A Blog

The Speed of Dark

Back in June of 2005, anticipating the 15th anniversary of the ADA, I wrote about "The Excuse of Architecture" and cited a New Mobility story of pre-ADA prejudice, discrimination and really bad customer service. One commenter compared the phenomenon of disabled people being asked to leave restaurants (because no one wants to see them eat) to the prejudice moms face when breastfeeding in public. I disliked the comparison because the prejudice against disabled people is for being who they are while the prejudice against nursing mothers was for a (reasonable and necessary) activity they want to perform.

Although I am outraged by the way mothers in our culture are hassled for breastfeeding, I was, frankly, offended that discrimination based on disabled people's existence and simple presence was compared to discrimination based on anyone's actions, regardless of what those actions might be. It seemed reductive of my personhood and that of the members of any group of people denied access to public places because of a group identity, real or perceived.

I stand by that, so far as it goes. But the novel The Speed of Dark by Elizabeth Moon has me rethinking the complex interactions between identity, behavior and prejudice.

I've been aware of the connection before, of course. I've used a wheelchair or scooter for all mobility for 24 years now, and body language is necessarily different when you move through the world sitting down. Also, I've spent the last couple years experiencing how the use of a trach and ventilator have effected how I communicate with others and how people do or do not adjust to how my communicating differs from the norm. For example, my ability to speak past my trach partly depends upon the position of the trach. I can speak better when I lean forward, and I typically need to play with the trach a little or cock my head to control air flow past my vocal cords. This ends up sacrificing a lot of conversational eye contact, but because delays in response or an uneven voice that cuts out also complicate communication I find that behaving a little strangely is most efficient. As if I could emulate "normal" anyway, right?

Anyway, my ability to consider disability and behavior as often separate issues has been a matter of relative privilege, since a wide variety of impairments directly involve behavior or are diagnosed principally based on behavioral norms. The Speed of Dark is all about behavior and whose behavior gets to be seen as normal and whose is considered abnormal, wrong, and in need of being fixed.

It's the fictional story of Lou Arrendale, a middle-age autistic man, working and living in a slightly alternate world where people his age have had developmental assistance and workplace accommodations to mainstream them into much of society. Lou is a bit of a relic because younger generations have access to infant genetic manipulation that apparently nullifies any processing and behavioral differences caused by autism.

The bulk of the story is told in Lou's voice. I'll be honest -- the very first time I picked up this book, I didn't get very far, and it may have been Lou's voice that I wasn't ready to hear. That was over a year ago. When I picked it up again recently, I was immediately immersed, couldn't put it down, and became very invested in Lou's particular world view. Author Elizabeth Moon, who has an autistic son, won the 2004 Nebula Award for The Speed of Dark. It was also a finalist for the Arthur C. Clarke Award despite the fact that this isn't a science fiction story.

There's plenty of plot to the novel: Lou's boss pushes him and other autistic employees to take an experimental cure, Lou has a stalker hostile to him (and disability in general), and Lou also has a love interest. But it is the first-person character study of Lou, his analytical, philosophical nature, and his quest to be accepted for who he is that captivates. Despite portraying an experience she doesn't live herself, Moon has done her homework on autism. In an essay on the topic she writes:

What is it like to be an autistic individual? Only autistic individuals know for sure. Interviews with autistic people, their essays and books, all suggest that the autistic experience is just as varied as the non-autistic experience. Some people are happy. Some people are not happy. Some people have close friends. Some do not. The similarities imposed by the condition do not impose an emotional tone or even a core personality in the Myers/Briggs sense....

One of the things which impressed me about our son, even before he could communicate in signs, gestures, or words, was the healthy quality of his emotional life. Yes, he screamed when he was upset, and I would have preferred a "Mom, I don't want to do that." But the things he enjoyed were reasonable, healthy things to enjoy: food that tasted good, music he liked, running around on the grass on a spring day. There was nothing weird about what he liked. His dislikes were harder to understand, but made sense once I realized that his sensory input was different than mine, and his responses were stronger. He felt hot when I barely felt warm. Tags in clothes (that I find only mildly irritating) bothered him a lot. He liked some colors more than others. Certain textures and flavors in food bothered him more. He liked some people and didn't warm up to others. These are perfectly normal responses in a small child--just on a different scale. His likes and dislikes tended to be more intense (typical of an earlier developmental stage: infants are usually very intense in their likes and dislikes.)

Through the plot, Moon tackles two of the thorniest questions regarding disability: What is "normal" and what's the value of a "cure"? Lou thoughtfully explores both ideas:

All my life I've been told how lucky I was to be born when I was—lucky to benefit from the improvements intervention, lucky to be born in the right country, with parents who had the education and resources to be sure I got that good early intervention. Even lucky to be born too soon for definitive treatment, because—my parents said—having to struggle gave me the chance to demonstrate strength of character.

What would they have said if this treatment had been available for me when I was a child? Would they have wanted me to be strong or be normal? Would accepting treatment mean I had no strength of character? Or would I find other struggles?

The construction of the novel and the metaphors used work with Lou's voice to help a non-autistic person relate to what Lou thinks and feels, what confuses and alarms him. The uncertainty of the cure Lou's boss is trying to coerce his employees to take and the information imbalance about the treatment which the boss exploits work together as a metaphor for the confusion Lou has in understanding how to navigate society and most social interaction. We can all relate to not knowing how to make a complicated decision, and in the novel's context we understand and relate to the confusion Lou faces because of his autism. That's assuming that the portrayal of Lou rings true for people with autism, of course.

Lou's hobby is fencing, and the detailed portrayal of his study and practice to improve his fencing skills works as a convincing metaphor for how treacherous and complex navigating workplace politics or nurturing a romance can be. Strategy and understanding the "opponent" are key. Fencing becomes a tool for seeing Lou's personal genius and charm as well as glimpsing what the life perspective of an autistic person might be.

Big spoiler follows. Act accordingly: The last 30 pages of the plot didn't resolve as I might have hoped, but from a literary perspective -- and a philosophical one -- Moon makes the story as compelling and thought-provoking as possible. Shorter version: I hate that Lou took the cure. I understand that his decision opens the debate up more than his deciding to accept himself as he is. On a personal level, I even relate well to the idea of using "the cure" to try something different and challenge yourself so completely. When I play with the philosophical question of a cure for my own impairments, it is not becoming normal or even being healthier that is compelling to me. It's enticing to consider taking the option that does not currently exist and challenges everything I know and am.

But I hate hate hate that "normal" wins. And I look forward to hearing what others thought of the book and topics it presents.


Other links about the novel:
2003 review in January magazine
2003 review at infinity plus
2005 review in Blog Critics Magazine

Just when you think you're safe

This past August really sucked. September did too. I got a routine feeding tube replacement at the end of July and then had weeks of agony every time I ate because the new tube was not placed right. There was too much of it in my stomach, it turns out, and when I ate the balloon at the end of it slipped down to block food from exiting into my intestines. I felt like I was being poked with a sharp stick from the inside. I was hungry all the time, then had intense pain when I dared to eat.

Of course, the cause of my pain went undetermined for all of August and half of September. It took some persistence to get medical personnel to just get that thing out and try a new one, please. And after a replacement fixed everything so that I was immediately pain-free, there was never an acknowledgment that it was the installation that caused the problem. I didn't even press for that because, well, I know the game. And I also know mistakes happen, I'm often a peculiar case to treat, and excellent doctors can do their best and still not have it work out. It may have been gross incompetence or a routine but regrettable error, and I know I won't get an official medical answer on that. I satisfy myself that I know more about who and where the risks are for the procedure and the institution I go to for it.

But that drama isn't what I want to write about.

On the day I got the successful replacement in mid-September, I first consulted with the doctor in the out-patient recovery unit. See, the painful tube was installed by a doctor I'd never met before. The guy who'd always done it before and who successfully fixed it is the one I've noted before seems to be pretty rude. I'll call him Doctor A. Doc A made some sensible comments in that consultation, saying he'd like to fix one thing at a time -- first the pain, but maybe next replacement I could switch to a Mic-Key tube. I have a G-J PEG tube which I describe here. The Mic-Key goes only to the stomach and is just a button on the outside rather than a tube and ports for both the stomach and jejunum.

In our consultation, Doc A suggested the Mic-Key and I explained that the whole reason I got the feeding tube to begin with is because of stomach troubles that made the jejunal port the key part of my anti-starvation strategy two years ago when I entered the hospital weighing 75 pounds. I can still swallow enough that I eat all my food by mouth now (and have for the last year or so since gaining weight and strength because of that tube), and while eliminating the feeding tube entirely might be a legitimate proposal, eliminating just the part of the tube that has been particularly life-saving for me does not seem logical.

Doc A seemed to accept all that in consultation. Our first priority was to change what he (correctly) thought from examining a week-old x-ray was an improperly placed tube. The week-old x-ray was from a consultation with Doc B, the doctor who had installed that painful tube. B didn't see anything wrong, but A had viewed it and immediately called me to tell me to come in and get it replaced since it looked all wrong to him. So, the Mic-Key tube wasn't the immediate issue anyway.

Then I got in the x-ray room and up on the table under the fluoroscope for the procedure. They took a preliminary look and found my wrongly-placed tube had migrated since the week-old x-ray and looked just fine where it was. (Possibly because I was avoiding food at all costs.) Suddenly Doc A wanted to leave it alone, or put in the Mic-Key. He believed the pain issue solved and had ticked it off his mental list.

I was laying prone on the table, unable to speak while horizontal, as is often the case with my trach. He was pushing for the Mic-Key, explaining how simple and attractive, how less-complicated and more comfortable it would be. The x-ray tech and assisting nurse chimed in.

"Just nod yes and we'll put it in," Doc A said. "Just nod yes. Just nod yes."

Fuck that, eh?

My personal nurse stepped in and said I needed to sit up to speak my mind. So they propped me up enough that I could tell them, "No. No no no no no!"

Get this painful thing out, please. Give me what has worked fine for the past year-and-a-half.

Doc A argued that we could put in the Mic-Key now, and I could always come back and reinstall a G-J PEG if I had trouble down the line. No problem. We'll change it when you say.

"I'm tired of being hungry," I said. If I have stomach trouble I want food that same day, in my jejunal tube.

The x-ray team tried to persuade me: "The longer you have a tube, the more trouble it is. We see this all the time. The Mic-Key is just a cute little button. You'll hardly notice it's there. If it doesn't work you can always come back."

"I've been back. I was here last week. I'm still wearing a damn diaper from the diarrhea-causing contrast dye* from that useless visit. I am hungry. I'm tired of being hungry today."

Doc A did change the tube as I wished. Reluctantly but kindly. And it's worked perfectly ever since.

But when they were saying this: "The Mic-Key is just a cute little button. You'll hardly notice it's there."

Here is what I heard: "If you work harder, you won't need a wheelchair at all. Won't that be nice?"

And: "Show me someone who can't walk, and I'll show you someone who's depressed."

And: "Wouldn't it be great to get off the vent and not have to lug that thing around?"

The answer: Appearance and conforming to the social norm is not in the interest of my health or quality of life. Sitting down to move through the world, when I finally did that in 1983, was a huge relief to me. I could engage with the world rather than being exhausted with the effort of just showing up. Ditto for the vent. Having energy is not depressing in the way that feeling like you're so short of breath you might pass out drags you down.

I don't know what mix of good medical advice and pressure to have me meet an able-bodied norm fueled Doc A and his x-ray staff. I know both were present, as well as A's apparent failure to listen to me in that consultation. In addition to Doc A's expertise in righting another doctor's wrong, here's what I take away from that outpatient visit: I am never safe. They may not be listening to me. They will ambush me when I am least able to speak for myself and try to do their own thing. Their actions will be motivated by medical knowledge and able-bodied assumptions about what I want and need. I am never safe.

--------------------------------------------------------

*Dye injected into the feeding tube shows up on the fluoroscope to assist proper placement. Until it works its way from my very slow-moving digestive system, it's all liquid poop.

Nobel laureate James Watson and the big liberal tent

Last month, scientist James Watson, who won the Nobel back in 1962 for his work in understanding the Double Helix structure of DNA, was busy apologizing for his remarks that Africans are less intelligent than other folks. Undercover Black Man reports this isn't even the first time this year the 79-year-old has been compelled to backpedal and apologize for offensive comments. Actually, he's got the sexism, homophobia and ableism going just as good as the racism, as noted in a Washington Post column by Michael Gerson:

In 2003, Watson spoke in favor of genetic selection to eliminate ugly women: "People say it would be terrible if we made all girls pretty. I think it would be great." In 2000, he suggested that people with darker skin have stronger libidos. In 1997, Watson contended that parents should be allowed to abort fetuses they found to be gay: "If you could find the gene which determines sexuality and a woman decides she doesn't want a homosexual child, well, let her." In the same interview, he said, "We already accept that most couples don't want a Down child. You would have to be crazy to say you wanted one, because that child has no future."

So let's just look at Watson for a moment. He's Mr. DNA. He was the head of the Human Genome Project, the mapping of our genes to determine which genes cause which traits, variations and health conditions. He's the guy who was in charge of discovering the most basic information about how human beings differ from one another. And his opinions about those differences? Africans lack intelligence, girls should be designed to be pretty, dark-skinned folk can't keep their pants zipped, and there's no problem or social loss to identifying and eliminating gay people and those with Down Syndrome before they're ever born.

These ideas Watson has about whose genes are good and whose are inherently bad are not random and unconnected. And I suspect it's also no coincidence that everything he's not (African, female, gay, developmentally disabled) falls short of being equal or worthy.

Gerson notes:

Watson is not typical of the scientific community when it comes to his extreme social application of genetics. But this controversy illustrates a temptation within science -- and a tension between some scientific views and liberalism.

The temptation is eugenics. Watson is correct that "we already accept" genetic screening and selective breeding when it comes to disabled children. About 90 percent of fetuses found to have Down syndrome are aborted in America. According to a recent study, about 40 percent of unborn children in Europe with one of 11 congenital defects don't make it to birth.

I don't know exactly how atypical Watson's beliefs are, but they're not as rare as Gerson indicates -- especially with regard to Down Syndrome and abortion. Gerson continues:

No one should underestimate the wrenching challenge of having a disabled child. But we also should not ignore the social consequences of widespread screening of children for "desirable" traits. This kind of "choice" is actually a form of absolute power of one generation over the next -- the power to forever define what is "normal," "straight" and "beautiful." And it leads inevitably to discrimination. British scientist Robert Edwards has argued, "Soon it will be a sin of parents to have a child that carries the heavy burden of genetic disease." A sin. Which leaves disabled children who escape the net of screening -- the result of parental sin -- to be born into a new form of bastardy and prejudice.

This creates an inevitable tension within liberalism. The left in America positions itself as both the defender of egalitarianism and of unrestricted science. In the last presidential election, Sen. John Kerry pledged to "tear down every wall" that inhibited medical research. But what happens when certain scientific views lead to an erosion of the ideal of equality? Yuval Levin of the Ethics and Public Policy Center, a rising academic analyst of these trends, argues: "Watson is anti-egalitarian in the extreme. Science looks at human beings in their animal aspects. As animals, we are not always equal. It is precisely in the ways we are not simply animals that we are equal. So science, left to itself, poses a serious challenge to egalitarianism."

"The left," Levin continues, "finds itself increasingly disarmed against this challenge, as it grows increasingly uncomfortable with the necessarily transcendent basis of human equality. Part of the case for egalitarianism relies on the assertion of something beyond our animal nature crudely understood, and of a standard science alone will not provide. Defending equality requires tools the left used to possess but seems to have less and less of."

Gerson apparently equates science with liberalism, and that correlation would be an interesting side debate, I suppose, though Watson certainly isn't sitting at the same progressive campfire as I am. Given his record, lets not pretend that Watson holds the liberal view of egalitarianism in any special esteem. Why does Gerson focus his criticism on liberalism? Possibly because the prejudices of the right are usually obfuscated by the anti-choice stance that does appear to accept developmental disability (and gayness and race) as part of the glorious diversity of human life, until it comes to funding things like special education or Head Start. Prejudices on the left can be seen as simple hypocrisy, something much easier to point a finger at.

Gerson says the "temptation of eugenics" involves a reductionism of individual human value into the tangible or quantifiable. While his point is an important one, and one I find especially important as a disabled feminist, he's reductionist himself in the way he shrinks the messy real-world issues of reproductive justice and choice for women into wobbly liberalism. And using Watson and his history of both scientific excellence and ideological bigotry to batter science and liberalism together is a cheap partisan strategy that fails to support the very people he criticizes Watson for devaluing.

h/t to Justice for All

Lately, at the Compound

I love unpredictability in my friends. People who say or do things it wouldn't immediately occur to me to say or do either intrigue or frighten me. Those who do not frighten me I often want as friends, and I've had some success in getting what I want in that regard.

In the past two years, I've learned that unpredictability is just about the last thing I want in the people who help me daily with personal care, trach health, vent upkeep, etc. I have 24-hour nursing assistance (the "nurse" part being required for state financing of assistance because I use a vent), and other than reliability and competence, predictability is what I crave most in my assistance. When someone is fluttering around me helping with suction or hygiene or other stuff that directly affects my person, the last thing I want is to be watching them and thinking "Now, what the hell are they doing with that?" Predictability requires less mental energy than astonishment or confusion and the less energy I expend with my assistants, the more I have for the rest of my life. And while predictability has been a little elusive at the Gimp Compound lately, it's not my biggest challenge.

It's been my biggest challenge these past two years to adjust to always always having someone present to assist me and keep me breathing. I don't go for strolls around the neighborhood alone, I don't stay home on my own for even ten minutes and I don't wander around the mall by myself. That's new these past two years. I'm a person who has always enjoyed being alone. I like my own company.

The idea behind this constant assistance is that my vent circuit could pop apart (as it does now and then) and no one wants to be responsible for my accidental death from lack of air and suffocation. I can breathe a little bit on my own, and in certain circumstances I can put my circuit back together again, but not so easily that it's a sure thing. So, the trade-off is that I get more supervision than your average toddler.

Having someone always waiting in the wings to assist is not nearly the luxury you might imagine it to be. Intimate discussions are weird with someone close at hand. Lively political debate at dinner always seems peculiar when a silent (and generally professional and discrete) presence sits in the next room. And, in fact, on days when the household has indulged in a big pot of chili it can be downright stifling to family entertainment.

Constant personal assistance is a serious challenge to privacy and personal autonomy, and I've learned a lot about myself and other people while trying to negotiate the space I need. My mp3 player is a key part of my "leave me alone" strategy. So is closing my eyes and pretending to sleep. If you can't escape people -- or even leave the room -- you sometimes must simply shut them out.

I first learned that two years ago while in hospital. If you can't walk away and someone is invading your space: be unapologetically rude. Ignore them. Wave them imperiously away. All young women should be taught this early. I can't believe it took a dire health crisis at age 38 to experience the freedom of blowing someone off when they're in your face and won't go away. Nice Minnesota girls just don't get that memo in their ordinary lives.

Predictability and privacy are linked. To be able to have assistance always around but not intrusive requires that assistance knows what to do without constant negotiation or discussion complicating the day. Home health care provides at least the hope of achieving that in ways inmates of nursing homes can almost never expect. No doubt those who do this care appreciate consistency too, since mistakes happen more easily in unfamiliar situations.

This is where my mental energy has been these past several months when I've been blogging much less. I've switched home health care agencies, said goodbye to four nurses, met and trained three nurses, and some other stuff I'll write about soon. I'm hoping to get back to writing more here this month, and I've joined up for NationalBlogPostingMonth to encourage myself.

Image description: The black-and-white photograph above is the upper back of a man with a tribal art tattoo across the shoulders and the following "tattooed" just below: "NaBloPoMo '07 Blog Free or Die" with a little skull image after the "'07".

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.

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.

Designer Babies and the Pro-Choice Movement

I'm suffering from Acute Blogging Malaise. So, I'll just post the link to this article and hope to say something relevant in comments if discussion on it erupts.

"Designer Babies and the Pro-Choice Movement" by Rebecca Tuhus-Dubrow in the current Dissent. A few excerpts:

In vitro fertilization (IVF) does not merely help the infertile to procreate; increasingly, it allows parents to determine the genetic makeup of their offspring. Initially, preimplantation genetic diagnosis (PGD) targeted severe childhood diseases, such as Tay-Sachs and sickle cell anemia. Now, more parents use it to screen out genes for late-onset, treatable diseases, such as colon cancer; sex selection is also popular. According to a 2006 survey conducted by the Genetics and Public Policy Center at Johns Hopkins University, 42 percent of 137 IVF-PGD clinics allowed parents to select for gender. Scientists predict that parents will be able to choose such characteristics as blue eyes or curly hair. Less certain, but plausible, is that scientists will be able to identify genes for more complex traits, such as intelligence and homosexuality. Genetic engineering, which will enable not merely the selection but the insertion of desired genes, is on the horizon. In the United States, this rapidly advancing technology is unchecked by any regulatory mechanism.

and

Even without the borrowed buzzwords, the pro-choice movement would be uneasily close to the issue. Historically, pro-choice arguments have focused on the right to privacy and freedom from government interference. Legally, those are the terms that define reproductive rights. The landmark Supreme Court cases Connecticut v. Griswold (1965) and Roe v. Wade (1973) recognized the right of individuals to control their reproductive destinies. Legal scholars predict that when the question of selecting the traits of offspring inevitably arrives in court, it will be considered in this framework.

Like it or not, pro-choice groups, then, will be compelled to take a stand. They will have to distinguish their concept of reproductive rights from that advanced by neo-eugenicists and to decide whether and how to endorse regulation of reproductive technologies without jeopardizing already tenuous rights. But along with these challenges come opportunities. By incorporating concerns about the abuse of reproductive technologies into a pro-choice platform, the movement can shift away from an individual-liberties paradigm toward a social justice orientation; move away from a single-issue focus on abortion toward a more comprehensive agenda; and form coalitions with other segments of the left.

and, although race, class and GLBT issues related to choice are prominently covered, the only explicit mention of disability and disability rights activists is bolded below:

This issue creates strange bedmates. The common political assumption is that conservatives would oppose the potentially radical change promised by reprogenetic technologies, while liberals would embrace the scientific progress they represent. And indeed, the religious right, concerned about the embryo and the blasphemy of playing God, condemns them, while some liberals are more inclined to welcome them on the grounds of “progress”—and, perhaps, in opposition to “culture of life” priorities. At the same time, economic libertarians oppose regulation of this three-billion-dollar-a-year industry, and a fringe of neo-eugenicists wants to create a super race. Qualms on the left include the potential exacerbation of inequalities, the eugenic overtones, and the environmental implications of meddling with nature.

Other progressive contingents have their worries. Disability activists are wary of technologies that essentially aim to eliminate their community. Gay and lesbian people have an especially complex relationship to assisted reproductive technology. I spoke to staff at the GLBT (Gay, Lesbian, Bisexual and Trans-gendered) Community Center in New York, who said that to the extent that it helps them have genetically related families, they welcome the technology. But if a “gay gene” is ever identified, their communities, too, could be threatened. Many feminists are troubled by sex selection, but fear that regulating any aspect of reproduction could jeopardize abortion rights.

Go over and read the whole article here.

One more photo

These group action pics give me happy chills.



Image description: From observer rachelleb, this color photo is taken from several stories above the street of dozens of ADAPT protestors , mostly in wheelchairs, in the far right lane of Chicago's State Street rolling single-file toward the headquarters of the AMA this past Monday.

I think it's safe to say. . .

that folks in wheelchairs have the edge in creating successful sit-in protests. Not that it's all about sitting around, but we do bring extra immovable objects with us everywhere we go. Immovable if we choose to make them immovable, that is.

This post is to notify feed readers of updates to the post just below on the ADAPT actions this week in Chicago. Specifically, the local Chicago TV news coverage links at the bottom of that post should be easier to access now.

Here's another video, this one from Chicago's Fox TV on Tuesday's protest and blockade of the Thompson Center.

The image above is another photo from Tim Wheat, showing dozens of people in wheelchairs filling a city sidewalk and the entrances to the offices of the American Federation of State, County and Municipal Employees (AFSCME), a union that persists in putting their members' incomes above the freedom of the disabled people housed in the institutions they serve. You can read Tim Wheat's diary of Wednesday's events at the ADAPT site.

Also check out the blog coverage of Galen Smith, an activist at his first ADAPT actions. He writes of Wednesday's action against the union:

We got periodic updates from our negotiators and learned that it was not going well. First AFSCME tried to counter the letter we gave them with a letter of their own. They expected us to sign a letter saying that nursing homes should stay open!! Then they said they would call their national office. Eventually they left the table and said they weren't coming back. When negotiations broke down the police moved in to start arrests.

AFSCME had 120 ADAPTers arrested today - for picketing. The irony was not lost on us as we chanted...

The People United Will Never Be Defeated!

...a chant that has long been used by striking unions.

The arrest process extremely relaxed. An officer approached me where I was standing blocking the alley and warned me that if I didn't move I would be arrested. I didn't move. Then he told me to follow the line of people heading for arrest. There was no police escort as we walked about a block and a half to line up on a sidewalk and wait for our citations. ADAPTers chatted with the officers as they wrote up our citations who laughed and joked with us. When the officer handed me my ticket he smiled and said, "You've been very bad. Here's your ticket" as he patted me on the shoulder and sent me on my way with a chuckle.

Updated: ADAPT action in Chicago

"Individually, no one's more invisible
than a person in a wheelchair.
Collectively they're pretty spectacular."
Source

How totally exciting and energizing is this?









Image descriptions: The four photos taken by Tim Wheat are part of ADAPT's coverage of the week's events here. The first is of Marca Bristo, CEO of Chicago's Access Living (the ILC) and former chairperson of the National Council on Disability, in a power wheelchair holding a Chicago Sun-Times newspaper layout of coverage from a 1992 protest where the large headline reads "Disabled take home-care protest to AMA's doorstep." She sits next to Laura Hershey, Denver writer of Crip Commentary, also in a power wheelchair outside the American Medical Association's headquarters in this 2007 protest.

The second photo is inside a building, taken from above, showing a half dozen activists blockading the entrance. Some people are sitting in power wheelchairs and scooters, many wear ADAPT t-shirts.

The third photo is outside the AMA headquarters. A woman is writing "Community Choice" on a large glass window with a red paint marker and activists are visible lining the outside of the building along the glass in the background. The Community Choice Act, Senate Bill S. 799 and House Bill H.R. 1621, seeks to break the institutional bias by using existing funding that now pays for nursing home coverage to provide the choice of community-based services instead.

The fourth photo shows a man, surrounded by other wheelchair users, chanting or hollering. In comments below, it's suggested he's also signing as he chants. Perhaps the sign for "Now."

From ABC Chicago channel 7: "Disability activists wrap up week of Chicago protests" (video at link too):

September 12, 2007 (CHICAGO) - Hundreds of activists for the disabled protested again Wednesday in downtown Chicago, demanding better housing conditions. They are angry with Illinois government officials for spending too much money sending the disabled to nursing homes.

Wednesday was the last day of what Adapt calls its fall action. The disability rights group has targeted medical and governmental agencies since Monday in its push for access to more community-based services.

Hundreds of members led a vocal call for change to the system that they say gives them only one option - care in an institution.

Members of Adapt parked their wheelchairs in front of the Chicago headquarters of the American Federation of State, County and Municipal Employees Union, at 29 N. Wacker.

They blocked the entrances and crowded into the lobby in a demonstration over housing options for people with disabilities.

"Everyone deserves a choice and right now, choices don't exist," said Gary Arnold of Adapt. "It's institutions or nursing homes or nothing for thousands of people."

Adapt is fighting for the Community Choice Act, a bill introduced to Congress earlier this year. It would allow patients with disabilities to access care in and around their homes, rather than rely on care from a nursing home.

Chicago's WGN covered the week's activities in video. The three individual clips cover the protest at the headquarters of the AMA and the shutdown of the Thompson Center. Here, here and here. Those links should work (for me, each opens three windows: the main WGN page, a WGN video troubleshooting page and the actual news video in Windows Media Player, preceded by a 20-second ad). Let me know if that doesn't work for you, please.

Update: I've added some info about the people in the above photos to the in-text image descriptions since commenters have helpfully identified the activists. Also, the links to WGN videos just above should now be a little easier to access, thanks to Stephen Drake of NDY (Check the Not Dead Yet blog for day-by-day coverage of the events and additional photos. Steve has been my source for all the links in this post, along with ADAPT itself.)