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.

Friday Music: Mark E. Smith and The Fall

The times they are a-changin', just a little, I think. The music news site TwentyFourBit reports:

"Taking the stage in a wheelchair after your hip breaks for the second time is pretty punk rock, we think."

Image description: A black-and-white photo of Smith giving a grimacing smile or snarl to the camera. He's 52 now (though he looks older) and missing a couple teeth.

When Mark E. Smith, lead singer and sole original member of the post-punk rock band, performed with his current line-up for The Fall this past Tuesday and Wednesday, he sang first from the wheelchair he is currently using and then, for the end of the Wednesday show, from the dressing room backstage. NME has further details, including a somewhat less punk rock subheadline (in italics):

Recovering singer adopts unusual singing position as he recovers from hip injury

The Fall played London's KOKO last night (April 1), with Mark E Smith performing most of the gig from a wheelchair - before he abandoned the stage altogether and sung from his dressing room.

Currently recovering from a broken hip, the frontman, dressed in a black leather jacket, wheeled himself around the stage to alter settings on the band members' equipment before moving to sit behind a guitar amp for most of the concert.

The last three songs were performed with Smith singing from the dressing room, and changing the lyrics to 'Blindness' to say: "I refused to go onto the stage at one point / You'll get over it in the morning".

The song "Blindness", from the 2005 album Fall Heads Roll, has rather impenetrable lyrics (at least two previous versions) where the first-person narrator only has one leg. I am not enough of a cult follower of The Fall to know if this is or is not a reference to Smith's first hip injury in 2004 when he completed part of an American tour from a wheelchair before pain and medication reportedly caused some canceled dates.

Anyway, here are those lyrics:

BLINDNESS

The flag is evil
Welcome: living leg-end

I was walking down the street
I saw a poster at the top

I was only on one leg
The streets were fucked

And the poster at the top of street said:
“Do you work hard?”

I was only on one leg
The road hadn't been fixed
I had to be in for half six

I was only on one leg
My blue eyelids were not (?)
There was a curfew at half nine
For my kids

There was a poster at the top of the street
Encapsulated in plastic
It had a blind man

So I said: “Blind man, have mercy on me.”
I said: “Blind man, have mercy on me.”

The flat is evil and full of cavalry and Calvary
And calvary and cavalry.

“Do you work hard?”
It said, “I am from Hebden Bridge.
Somebody said to me: I can't understand a word you said."

Said: “99% of non smokers die”
“Do you work hard?”
“Do you work hard?”

I was walking down the street
And saw a picture of a blind man

The flat is evil
Of core? cavalry and calvary

Of core(?)
Blind man, have mercy on me
Said, blind man, have mercy on me

??
I am a ?
My blues eye get…ID/I get
My curfew was due half eight
Now its half past six

My curfew is at 9:30
I said. “Do you?”
Blind man! Have mercy on me
Blind man! Have mercy on me
Blind man! Have mercy on me

I’m on one leg
My eyes can’t get fixed
And my kids
Can’t blue eyes get fixed

Blind man! Have mercy on me
Blind man! Have mercy on me


BLINDNESS (Peel session version)

And all humans
Cavalry or calvary
And not a drop of water
Or paper
Or paper
J.W. said "walking bass, walking bass"
Don't forget, don't forget
He expected Aristotle Onasis
But instead he got Mr James Fennings from Prestwick, in Cumbria
Do you... reflect this evil?
Thought of cavalry and calvary
His first appearance was on Moscow Road
The poster came at first
At first I thought it was just a poster
I was talking to James Seymour
Eyes wide open
The neck was slightly dislocated
But then I walked up the street
There was a repellent plastic
Said poster with a picture
Do you work?
I was on one leg
At the top of the street
There was a poster
A plastic front
From Moscow Road it came
From Deansgate it came
From Narnack Records it came
I was on one leg
I had to be in by 9.30
I said walking bass
Paper times 2
Paper times 2
Paper everywhere and not a drop of water to be seen
I said
I was by the ocean
I saw a poster
I am [?]
I am [?]
Everywhere I look I see a blind man
I see a blind man
Everywhere I look
I see a...
I can't get my eyes checked
My blues eyes can't get checked
I'm only one leg
I said to poster, "When's the curfew over?
I said, "Blind man, have mercy on me."
I said, "Blind man, have mercy on me."
Blind man have mercy on me
Oh Great One I am a mere receptacle
The egg tester for your sandlewood and other assorted woods
In dark green
Blind man have mercy on me
I got a metal leg - truth
Flat is the evil of calvary and cavalry

Anyone want to interpret that?

About the times a-changin': If singing from a wheelchair is now considered "pretty punk rock", recall that in 1974 Robert Wyatt of Soft Machine, performing on the British TV show Top of the Pops just a year after an accident left him paralyzed, was considered "not suitable for family viewing" because of his wheelchair.

On the other hand, when has punk rock ever been suitable for family viewing?

Further sources to enjoy:

BBC News interview with Smith in May, 2008

The Fall wiki

Mark E. Smith wiki

the band's website

YouTube video of "Victoria", perhaps The Fall's most recognizable hit, from the 1988 album The Frenz Experiment

YouTube video of a live performance of "Blindness"

YouTube video of a concert performance of "Totally Wired" from the 1980 album Grotesque (After the Gramme)

Sara

There are those people online that you never get to meet but suspect could be your very best friend if they only lived closer. I tend to work them into daily offline conversations sometimes, with references that don't sound as strange as they used to ten years ago: My Friend From Chisago County (only she doesn't live in Chisago County anymore), SuezBoo in South Africa, The Dancer in NYC, Sara in Massachusetts (you know, the one who takes photos of love potatoes).

You hope to travel, meet for lunch. You trade notes and laugh out loud, long-distance, at their clever crush-worthy minds.

You are heartbroken when you finally understand that the small portion of their greatness that you already got to see is all you will be so lucky to share.

Friday Music: Bradford Cox, Deerhunter, Atlas Sound

"I've always been a leader of awkward people," Bradford Cox says.

Cox, lead singer (and also guitarist, keyboardist and player of various other stuff) of Atlanta band Deerhunter and solo-project Atlas Sound, is a musician whose personal appearance, live stageshow presentation, music media critiques and band song lyrics all bubble over with a freakshow differentness developed from the experience of adolescent illness and disability. Cox has said as much himself.

Image description: A color photo of Cox against an all-white background. He's sitting, knees bent and arms upraised, facing the camera and smiling. He wears jeans, tennis shoes and a striped sleeveless shirt that reveal long limbs and skinny biceps.

Cox was born with the genetic connective tissue disorder Marfan Syndrome. He's 6'4" and so shockingly thin that his appearance has been the relentless subject of music reviewers' commentary. And he's turned that around and used it for dramatic effect with about as much ease as possible. In an interview with Rodney Carmichael at Creative Loafing, Cox says:

"I hate my body just as much as everybody else comments on it or hates it, you know. I mean, I think most people [hate their bodies]. . . . [Marfan Syndrome] affects your personality, because a lot of your personality is a product of your self-image."

But he also says, (and I so love this):

"I'm not trying to exploit myself to provoke people or shock people. But I'm not shy at the same time. So I guess I started realizing what effect it has on people. ... I say 'fuck it' and try to hit the ceiling with everything you do. And if you have something that one person would consider a handicap, I would say, like, just try to make it explode, you know?"

What Cox calls hitting the ceiling or exploding is his live band performances. From Seattle Weekly's Andy Beta:

Cox believes Deerhunter's reputation is partially founded on this freak-show allure. "I can just walk onstage and people will be, 'What the fuck?'" he says in between drags on a cigarette. "If anything, I wouldn't mind representing something for people, representing sickliness, fucked-up-ness. . . . At least it comes natural to me. And I'm not Marilyn Manson."

From the Phillyist:

[Deerhunter's] stage presence was interesting. There was no banter, but they didn’t need it. The guitarist, who wore a shirt that read “Just Say YES” in the tradition of the famous anti-drug campaign, attacked his instrument with the same intensity as his counterpart, who wore a black and white striped shirt that called to mind the Hamburglar. Lead singer Bradford Cox was wearing a dress. Yes, a Laura-Ashley-minus-the-lace sleeveless number with green and earth tone-colored print. His wig was draped over his face so he appeared to be an apparition of hair, limbs, and grandma’s housedress.

It was one of the oddest concert experiences we’ve had. We were equal parts attracted and repelled. Trying to make sense of it in our mind, we kept coming back to an image of Carrie, doused in a bucket of pig's blood. Horrifying, and yet wouldn’t that warm, viscous liquid be kind of comforting?

That's maybe an apt comparison, since Deerhunter's critically-acclaimed 2007 album Cryptograms is very much about an adolescence spent in hospital. On the band's blog, Cox explains the lyrics of the song "Spring Hall Convert":

So I woke up
In a radio freeze
Occupied by a couple of girls
I knew from
Way back when, where
Oh, I had my face like the ocean
So I’d radiate but
Too much radiation
I walk around like a walker
And like a walker
Always choosing where to go
And where to be

Radiation

Too much radiation

So long loneliness

So far from home

(When I was sixteen I was hospitalized for extensive surgeries on my chest ribs and back because of marfan's. That entire summer was like completley erased. I was in a coma for a couple of weeks. I got to really understand what its like to not be well. I've always sort of understood, growing up with marfan's, but this was hardcore shit. I wrote this song transposing this high school acid trip where i saw my two best friends back then, Sarah and Chrissy, bathed in this golden spring light in the hallway of my highschool and felt really close to them, like we were sisters. I always felt genderless around them. I actually took a photo of them in that hallway that day which i will find and upload. If the song could be captured visually, this photo would be it. Anyways, I was trying to transpose the concepts of illness (in this case I was writing from the perspective of someone going in and out of conciousness during chemotherapy, and how they would miss their friends, their past experiences, and anything that reminded them of normalcy, or a time before misery. Nostalgia as anesthetic)

And the song "Hazel St.":

There was no connecting my actions with words
In the bright sunlight, the movement of birds
The car ride home, was blinded again
The light would not focus the light would not bend
There’s no use calling I know what you’d say
Over and over it ended today
Worlds lost their meaning and could not explain
Why the subject was always just out of frame

I was sixteen
I lived on Hazel Street
Protect me from the scene
And guide me with your heat

Ice forms in sheets
There melting in the street

(This goes back to the whole sixteenth year of my life spent in a hospital bed thing. I have major issues about it and have recently started going to therapy and am back on antidepressents. Obviously as so many of you have noticed, my body is fucked up. I never really recovered from all that surgery and stuff. This song is kind of like a jack off fantasy about what it would have been like if i had been the person i wanted to be physically (i.e. healthy, cute, whatever...) and lived on Hazel St which is this quaint little street of the town square in downtown Marietta, Georgia.. It's just a fantasy about being normal. Its kind of prefaced with an argument or a conflict or a relationship breakdown, the kind of things that make me fantasize about having been born normal even more.)

Cox's solo-project Atlas Sound's 2008 album, entitled Let The Blind Lead Those Who Cannot See includes the song "Quarantined," with these brief, repeated lyrics:

Quarantined and kept so far away from my friends.
I am waiting to be changed.

Deerhunter's 2008 releases are the (again) critically-acclaimed Microcastle and it's full-length companion Weird Era Cont.

Creative Loafing's Carmichael writes:

To his credit, Cox has turned his inherent weakness into a strength. And the result is as vivid as Deerhunter's sound, which is way too hypnotic and eerily transcendant to be overshadowed, even by Cox. On the contrary, the lead singer's physical appearance is the perfect complement to the wonderfully weird music the band makes. Whereas one without the other would only be plain old weird at best.

Weird is how I feel about the music. Some of it I really enjoy and other songs seem like mostly noise to me. But I'm interested in seeing if repeated listening will alter that at all.

Check out some YouTube if you like:

Music video for "Strange Lights" from Cryptogram

Music video for "Agoraphobia" from Microcastle

"Spring Hall Convert" and "Hazel St." live in Chicago

"Quarantined" from Let Those Who Are Blind Lead Those Who Cannot See


And other resources about Cox and his bands:

Wiki on Deerhunter

Wiki on Atlas Sound

Deerhunter blog, also Atlas Sound, mainly written by Cox

Rolling Stone magazine bio of Deerhunter

Winter at the Gimp Compound

The holidays and the new year went well for me, though my computer needed some repairs that kept me from writing here for about a month. Happily, and for the first time in my 40 years of experience with expensive electronic equipment, my computer was still under warranty (by about five days!) and I got the disc drive replaced for free. Merry Christmas to me!

I had my feeding tube removed just before Christmas because I haven't needed it in so long and it seemed like the right time. In retrospect, I might have had it taken out a while ago if I'd understood the size and shape of it inside me a bit better. I have less indigestion and nausea with it not there to tickle my insides, so even though I expect to need the feeding tube again some day as my muscles continue to weaken, it's great to be without it for now.

Today was sunny with a pure blue sky and the snow melting off driveways. For much of the past six weeks I've kept inside and away from below zero temps that give the vent a worrisome little wheeze when out in the raw air. There's no way I know of to protect lungs from frigid air being pumped directly into them, minus the miraculous upper sinus warming system. So, I've been hibernating, reading, listening to audiobooks, watching LOST and Battlestar Galactica. And managing some little home care dramas I won't be talking about here.

I finally read Jessica Valenti's Full Frontal Feminism, which provoked so much blog controversy when it was published in 2007. It's a little anti-climactic to read it now, so long after all that discussion. I found it to be very basic, and almost entirely lacking in even the knowledge that disabled women exist -- disability is included in a U.N. laundry-list quote of women's issues, and near the end of the book Valenti mentions ability and age as two interests she won't get to talk about. But disability isn't in any other rollcall of women's issues elsewhere in the book, even when the other standards are named: race, religion, sexual orientation. Nor does disability come up when exploring the flipside of "choice" and how race and class (and disability) often mean that women in these categories are coerced out of parenthood rather than being denied birth control and abortion. None of the extensive resources at the back of the book were aimed at women with disabilities. Accessibility as a necessary part of all the activism Valenti touts was never brought up. Disabled women are invisible in this book.

I don't think it's a bad or useless book. Just rather alienating if you're not part of a specific young, white, straight, middle-class (or better), nondisabled sorority girl constituency of women it's meant for.

Anyway, my computer works now and I'm possibly staying home until Spring hits. So more blogging.

Music Friday: Antony and the Johnsons

My newest music obsession is Antony and the Johnsons. Antony Hegarty is, as described by SignOnSan Diego, a "brawny-looking, transsexual Irish-American maverick with a wonderfully androgynous voice and a tremulous chamber-pop style all his own."

One song on the newest album, The Crying Light, is called "Epilepsy is Dancing." To fully appreciate it, read the poetry of the lyrics first:

Epilepsy is dancing
She's the Christ now departing
And I'm finding my rhythm
As I twist in the snow

All the metal burned in me
Down the brain of my river
That fire was searching
For a waterway home

I cry glitter is love!
My eyes pinned inside
With green jewels
Hanging like Christmas stars
From a golden vein

As I came to a screaming
Hold me while I'm dreaming
For my fingers are curling
And I cannot breathe

Then I cried in the kitchen
How I'd seen your ghost witching
As a soldering blue line
Between my eyes

I cry glitter is love!
My eyes
Pinned inside
Sea green jewels
Hanging like Christmas stars
From a golden vein

Cut me in quadrants
Leave me in the corner
Oh now its passing
Oh now I'm dancing

Then listen to the song. Many songs by Antony and the Johnsons have an operatic, cabaret feel, with Antony's soaring voice. This song is delicate, with piano, guitar and strings.

After just hearing it, if you're able, then watch the video from Pitchfork TV (NSFW):



Video description: From the record label: "Antony asked his friends the Wachowski Brothers to work with him on a video for his new single 'Epilepsy Is Dancing'. They in turn invited painters Tino Rodriguez and Virgo Paradiso to create costumes and a mystical environment and choreographer Sean Dorsey and his dancers to bring the dream sequence to life. Antony's artistic partner Johanna Constantine stars as herself in the role of 'Deer Monster'. The video was lit and shot by the up-and-coming directors of photography, Chris Blasingame and Banker White, and produced by Jim Jerome. The production team collectively named themselves AFAS. Please enjoy the fruits of their San Francisco art party."

The video begins and ends in an alley where a woman walks alone and sees a deer many yards ahead of her just as she has a seizure and falls to the ground. A colorful Midsummer's Night Dream-esque world of half-nude body-painted dancers awaken the woman, now painted silver and wearing a headdress of leaves and deer antlers, in a sensuous little orgy of dancing. Some wear carnivale type masks, as does Antony, whose head appears superimposed and flowers flow from his mouth as he sings. The dancers cradle her, carry and writhe with her, then set her down in a leaf-covered woodland with a male dancer very reminiscent of Shakespeare's Puck leaving her last, their outstretched fingers slipping from each other's grasp as the seizure causes spasms and the woman's hands curl. She wakes back in the urban alley with the real deer nuzzling her hand. Then she's all alone and rises and leaves, smiling.

Here's an alternate, touching live performance of "Epilepsy is Dancing," along with a brief interview and "Another World," a second song from the new album, from The Culture Show of the UK.

For another song about an epileptic seizure check out Joy Division's "She's Lost Control."

When the wheels make the man, part 7

From newsday.com, we get this headline:

Woman accused in wheelchair death faces homicide charge

Yeah. The death was actually that of a human being, a man using a motorized wheelchair. It was a hit-and-run. The woman appears to have been intoxicated. Also, the man who died, Ranford Beckford, 51, was driving his wheelchair on the road's shoulder about a mile from his home.

My personal opportunities for driving along a roadside usually were caused by either lack of curb cuts or lack of adequate, accessible transportation. Or both.

Because you are nothing without your assistive equipment. See parts 1, 2, 3, 4, 5 and 6 of this series.

When the wheels make the man, part 6

For the first time in this series, the wheelchair makes the woman instead of the man. Not really an improvement.

From the Australia Courier Mail, a headline about a man stalking a woman:

Man, 82, accused of stalking wheelchair woman, 65

Actually, both people in this report use wheelchairs though the headline characterizes only her as a "wheelchair person." If the news report can be trusted more than the headline, the woman's request in court to have the man designated as a stalker is based on one experience where the man "drove straight at her, swerving away only at the last moment."

That's understandably frightening. But in itself it could indicate the man's lack of driving ability of own wheelchair rather than stalking. The report doesn't indicate he followed the woman or repeatedly drove at her. If malice was intended, that would be reason to mention a wheelchair in the headline, with respect to the suspect and not the victim. It would be nice, when a news agency covers a story, if they'd not selectively use one person's status as a wheelchair user as a de facto indicator of victimhood.

Because you are nothing without your assistive equipment. See parts 1, 2, 3, 4 and 5 of this series.

When the wheels make the man, part 5

From Dayton, Ohio, a man who uses a wheelchair burgles a restaurant four times in one week. Naturally, the headline about it reads:

Wheelchair burglar raids restaurant four times in week

It wouldn't have to read as if the man was stealing wheelchairs too. In fact, it wouldn't have to mention the wheelchair at all, except that is apparently what makes this crime newsworthy.

Here's an actual, alternate headline:

Police: Man In Wheelchair Is 4X Burglar

The body of both stories is exactly the same AP report.


Because you are nothing without your assistive equipment. See parts 1, 2, 3 and 4 of this series.

Things that crack me up #51

Image description: A color photo of a nice little sign for restrooms showing a female figure, Wheelchair Dude (I consider "Dude" gender-neutral -- dooooode), and a male figure, all in variations of the classic access symbols. The sign has a brown wood frame and is in shades of brown, green, black and white. The female figure wears a brimmed hat and a brown and green dress. The male figure has brown pants and a black top with a white button-down shirt underneath. Wheelchair Dude's chair is white and she's dressed in black. Both Wheelchair Dude and the male figure wear sombreros. Arrows underneath the figures point, presumably, toward equally charming restrooms.

Photo posted to Flickr by mwboeckmann who also posted Viking Wheelchair Dude.

Things that crack me up #50

Image description: A color photo of a sign that has Wheelchair Dude and several other access symbols in a row above writing in an Asian language, with English below that. Along with Wheelchair Dude there's a person with a cane in profile looking about to sit down, though there's no chair behind her. Also, there's an adult holding a child's hand and a pregnant woman. The English translation of the Asian writing reads simply "Please Use Anyone."

h/t to Shiva of Biodiverse Resistance

Tomorrow is Wednesday again

It's also International Human Rights Day.

Wednesday is, you may remember, the day on which, most weeks, Ray Sandford of Columbia Heights, Minnesota, is woken up early and taken to a nearby hospital for forced electroshock treatments. Here are some things to know about Ray, from an extensive FAQ provided at MindFreedom International:

Ray is a 54-year-old Minnesota resident who has regularly been receiving "Involuntary Outpatient Electroshock."

Like all other USA states, Minnesota has loopholes allowing citizens to receive electroshock over their expressed wishes.

Ray says the weekly forced electroshock is "scary as hell." He absolutely opposes having the procedure. He says it's causing poor memory for names such as of friends and his favorite niece.

"What am I supposed to do, run away?" Ray asks.

Ray has been in and out of the mental health system for more than 30 years, with a diagnosis of "bipolar." According to his mother, the mental health system mainly tried psychiatric drugs on Ray, and when those didn't worked they turned to electroshock. Apparently, other alternatives have not been offered to Ray and his family beyond psychiatric drugs and shock.

He is not being forcibly shocked for any criminal justice reasons. According to more than one authority, Ray has no serious criminal convictions, at least for the past number of years.

The bottom line is, there is no good reason to forcibly electroshock anyone, it is inherently intrusive, traumatic and brain damaging. Despite his experiences, Ray remains crystal clear that he does not want his forced electroshock, and he wants to tell the world. Especially, forcibly shocking someone out in the community makes everyone even in their own homes unsafe.

After months of forced electroshock, Ray got desperate. Ray phoned his local public library's reference desk and asked about human rights groups. The reference librarian referred him to MindFreedom International.

Taxpayers are paying for Ray's electroshocks, including the more than a dozen personnel -- such as conservator, guardian, judge, psychiatrist, court-appointed attorney, anethesiologist, attendants and more -- who surround Ray. Other proven alternatives beyond psychiatric drugs and electroshock tend not to get as much funding.

The national media speculates that Governor Pawlenty may have higher political aspirations. He has campaigned for a "get government off our backs" philosophy. He has been Governor since 2002.

What can you do to help?

It is time to take the Ray Campaign up a notch, peacefully but strongly!

Let this become a top issue in the Governor's office.

Telephone Governor Pawlenty's office *NOW*:

Call any day, but especially call *before* Ray's scheduled electroshock next Wednesday, 10 December 2008.

Call from anywhere in the world phone (651) 296-3391.

From inside Minnesota phone toll free (800) 657-3717.

You have the best chance of reaching staff from 8:00 am to 4:30 pm Central Time weekdays.

Read more about Ray at MindFreedom International and read the only local (or national, really) news coverage on Ray here.

New books on theology and disability

I haven't read a book on disability and religion since The Disabled God: Toward a Liberatory Theology of Disability by Nancy Eiesland came out in the mid-'90s. That's a great book, by the way, but it's exciting to see three brand new books on disability and religion -- and a thoughtful review introducing them over at The Christian Century.

The three books discussed by Brian Volck are:

Theology and Down Syndrome: Reimagining Disability in Late Modernity by Amos Yong,

Spirit and the Politics of Disablement by Sharon V. Betcher, and

Vulnerable Communion: A Theology of Disability and Hospitality by Thomas E. Reynolds.

Volck looks at each book separately but here's an excerpt on his general thoughts on the topic:

These authors present twin challenges to theologically informed, able-bodied Christians. First, they challenge us to move beyond the relatively easy tasks of redesigning church sanctuaries and striving for visible diversity in liturgies and committees, and to begin engaging the far more difficult mystery of desiring and entering into communion with one another. What liturgical and ecclesial practices can we embrace that will make clear our human interdependence in Christ without allowing us to merely collapse into trivializing sentimentalities like, "Everyone is handicapped in their own way"? We may face greater challenges in becoming interdependent with persons who have intellectual disabilities than with those with physical disabilities. The practices and experience of Jean Vanier's L'Arche communities have much to teach us in this regard.

Second, disability raises thorny questions about traditional interpretations of Christian doctrine: Does God will severe disability? Does salvation through faith imply personal intellectual assent? What does it mean to be formed in the image of God? Does disability persist in the resurrection of the body? Once again, severe intellectual disability may present the greatest challenge.

Yong, Betcher and Reynolds do not present systematic theologies of disability. Instead, they offer stepping-off points for theological reflection. More important, they challenge readers to interrogate their own lives and assumptions, moving discussions past the self-satisfying mantras of inclusion and diversity and into new, potentially frightening and grace-filled territory.

While you're over there, check out an article on musician Curtis Mayfield, the legendary Chicago bluesman who was paralyzed in an accident while on stage in 1990 and died in 1999.

Friday Music: Neil Young

Image description: From 2007, a color photo of Neil Young from the waist up. He's giving the peace sign while standing at a microphone dressed all in black save for a silver bolo tie.

The casually listener and fan may not be aware that Neil Young is yet another famous musician with disabilities. In 1951 at the age of six, Young contracted polio. Since childhood he's also reportedly had diabetes and epilepsy. In 2005 he had successful surgery for a brain aneurysm. He also has two sons with cerebral palsy and in 1986 he and his wife started the Bridge School in San Francisco, a learning center for disabled children. A 1989 alternative rock compilation album raised money for the school.

So, those are Young's numerous "credentials." Here are some fun details:

His song, "Helpless," is about his experience with childhood polio. Here's a link to a YouTube video of an old stage performance (my guess is early '70s), and here are the lyrics:

There is a town in north Ontario,
With dream comfort memory to spare,
And in my mind I still need a place to go,
All my changes were there.

Blue, blue windows behind the stars,
Yellow moon on the rise,
Big birds flying across the sky,
Throwing shadows on our eyes.
Leave us.

Helpless, helpless, helpless.
Baby can you hear me now?
The chains are locked and tied across the door,
Baby, sing with me somehow.

Blue, blue windows behind the stars,
Yellow moon on the rise,
Big birds flying across the sky,
Throwing shadows on our eyes.
Leave us.

Helpless, helpless, helpless.

From the 2002 Salon review of Shakey: Neil Young's Biography:

Everyone who's heard Young's "Helpless" (which means everyone who's been in earshot of a radio or stereo in the last few decades) knows that he comes from "a town in north Ontario." It was in that town -- Omemee -- that Young, now 56, contracted polio when the virus swept through Canada in 1951. It transformed the pudgy 6-year-old and nearly killed him. "Neil got polio and lost all his girlish curves," Rassy, Young's indomitable mother and a central character in "Shakey," tells McDonough. "Damn near died. Gawd that was awful ... Christ, he looked like hell on the highway. Skin and bones. He never got fat again ... We didn't know if he'd ever walk." When he came home from the hospital "fresh from a disinfectant bath, his black hair in spikes," Young asked the adults, "I didn't die, did I?"

I remember when polio was the terror that stalked the nation, when approaching standing water, say, would earn the harshest of parental rebukes. One of my oldest friends got it in '53 and has been crutching it for half a century; another acquaintance of mine spent most of his 49 years in an iron lung thanks to polio. What an experience like that may do to you -- assuming it doesn't kill you -- is radically alter your perspective and imbue you with a certain bravado and fearlessness, not to mention a sometimes trenchant honesty. Once you've been to hell and back, the things the rest of us find anxiety-inducing -- the scary odds against making it as an artist, for example -- aren't all that scary. Pam Smith, a girlfriend of Young's when he was a teenager, recalls, "Neil was insecure as a person -- I think that's why playing music was so good for him. He had all the confidence in the world in that role."

McDonough's exploration of Young's often tenuous physical state -- he's also epileptic and used to have seizures on stage early in his career -- is one of the more intriguing threads in the book and a key, perhaps, to the singer's sometimes irrational confidence and indefatigable persistence even when those all around him -- Stephen Stills among them -- voiced nothing but discouragement about his abilities.

Musical abilities, that is. Young doesn't have a pretty voice, but everyone knows at least one or two (or dozens) of his songs. Here's a live performance of "Ohio" recorded at Massey Hall (a Toronto theatre) and "Heart of Gold," both stage performances from 1971.

From Neil Young Quotes:

Polio fucked up my body a little bit. The left-hand side got a little screwed. Feels different from the right. If I close my eyes, my left side, I really don’t know where it is - but over the years I’ve discovered that almost one hundred percent for sure it’s gonna be very close to my right side… probably to the left.

- Neil Young interviewed by Dave Zimmer, BAM, 22nd April 1988

My favorite fun fact about Young: In the late 1990's Young bought the Lionel Toy Train company to delight his son Ben. According to Rolling Stone magazine, much of Young's 1980s musical output reflected his frustration at difficulties communicating with his son Ben who, along with an older brother, has cerebral palsy.


Wiki on the song "Helpless"

An extensive Rolling Stone magazine biography

Neil Young News -- a blog on everything you could possibly want to know about the artist

YouTube video of an October 2007 interview on BBC 2. It features commentary by a guy who was "converted" to the beauty of Young's music at a concert. He discusses Chromes Dreams II and the evolution of Young's work with the artist. If anyone locates the transcript for this, please link to it in comments.

Famous people with polio

Call for submissions on feminism, disability & activism

From the f word:

The Feminist Activist Forum is calling for submissions for a zine on feminism, disability and activism:

Disability has been treated as an unglamorous side-issue within feminist activism.

We are looking for writing and artwork that addresses attitudes to disability within the UK feminist movement.

• Have you experienced exclusion from feminist groups and events because you have a disability?
• Are there any areas of feminist rhetoric that you find dis-ableist and alienating?
• Do you have ideas about how feminist groups and events can be made more accessible and inclusive?
• Can you tell us about positive experiences of access and inclusion?

Anything else on the subject also welcome!

We are interested in personal accounts, poetry, art, research and practical tips.

Please email drafts, abstracts, ideas, or questions to disability@feministactivistforum.org.uk

Deadline for drafts: 30th January 2009

When the wheels make the man, part 4

Out of Spokane, Washington, news of a man who uses a wheelchair falsely reporting being assaulted. The Washington state TV station KXLY offered this headline on Tuesday:

Police: Man made up wheelchair assault story

No, a wheelchair was not assaulted or even alleged to have been assaulted. The man who made up the assault uses one to get around.

Further coverage has been somewhat better. The Seattle Times reports that depression over the holiday season led Kenneth Koch to stab himself, then lie to a friend who took him to the hospital for treatment of the wounds. From there, police were called and the lie snowballed into media coverage and people offering the man money.

Because you are nothing without your assistive equipment. See parts 1, 2 and 3 of this series.

Things that crack me up #49

Wheelchair Guy becomes an astronaut. The photo from failblog.com shows a parking space with Wheelchair Guy, the international symbol of accessibility, painted in the space. Except the wheel part of the symbol is not under the guy, it's over his head like a big bubble. I suppose the two-piece template for painting the symbol got botched up. Either that or visiting aliens will now be competing for prime parking spots.

Korean girl still to be cared for by family of rapists

Here's the story in its entirety from The Korea Times, the only English-language, non-blogger source I could find for it:

Court Ruling on Rapists Draws Anger

By Kim Rahn
Staff Reporter

A court handed down suspended jail terms to four family members who repeatedly raped a teenage relative who suffered from an intellectual disability.

The Cheongju District Court Thursday sentenced an 87-year-old grandfather and two uncles of a 16-year-old girl to four-year suspended prison terms for sexually assaulting and raping the girl for the last seven years. Another uncle received a three-year suspended jail term.

The court acknowledged that their crime was ``sinful'' as they used the young girl, who is their family member, to satisfy their sexual desires. But it gave the suspended terms, saying, ``The accused have fostered the girl in her parents' place. Considering her disability, she will also need their care and help in living in the future.''

The court added it took the accused people's old age and illness into consideration.

Citizens strongly denounced the ruling, saying the punishments were too lenient for the grave crime. Internet users said it is absurd to release them to ``take care of her,'' as she needs help from others, not from rapists. They also said those committing such a crime do not deserve consideration regarding old age or illnesses.

Some bloggers are collecting signatures to oust the judge who made the ruling. The prosecution also decided to appeal. ``One of them even has a previous conviction for rape but was given a suspended term. The ruling is unacceptable,'' a prosecutor said.

English-language bloggers in South Korea have been passing this story around for a week now, mostly discussing their outrage at how bad the Korean justice system is at punishing sexual assault. This is juxtaposed against another news story of Korean prosecutors demanding a famous actress be jailed for 18 months for adultery, though bloggers are focusing little on the disability aspect and more on the sexual politics of the Korean judicial system and Korean culture. Disability, in the English-language analyses of this news, is mostly invisible. It's not clear to me how it rates in importance among Korean citizens.

h/t Feministing

When the wheels make the man, part 3

From the Sunday Mail in the UK, we get this headline:

Wheelchair pervert David Bennie jailed for decade of child abuse

No, the man was not being perverted with a wheelchair. He just sits in one, though the brief news story does end with the suggestion that he's faking his disability:

A WHEELCHAIR-BOUND paedophile has been jailed for four years for a decade of sex attacks.

David Bennie, 47, won three children's trust before subjecting them to depraved attacks.

The widower would strip during "naked nights" at his home and urged the youngsters to do the same.

He abused two sisters from when they were 12 until they turned 16.

Bennie also tried to force a 16-year-old boy to have sex with another man.

He showed hardcore porn to the children at his home in Irvine between 1996 and 2007.

The ex-railwayman was jailed at Kilmarnock Sheriff Court last week after being earlier convicted of lewd and libidinous behaviour and sexual assault. He was put on the sex offenders register indefinitely.

Bennie was wheeled into court by relatives but one victim claimed it was a sham and that he chased her upstairs and into the garden, stopping when he feared being seen on his feet.

Of course, use of a wheelchair never precludes the total ability to walk -- many, many people use wheelchairs because they help with various details of mobility, not because they are incapable of walking at all.

Because you are nothing without your assistive equipment. See parts 1 and 2 of this series.

Lame Duck

Image description: A color cartoon drawing of a white duck with George Bush's head and one hand, but a duck bill for a mouth. He's holding the red hotline phone and there's a cast on one duck foot. The cast has the seal of the president on it.

Like most people I know, it's been a refreshing change these past couple weeks to see how mostly toothless Bush appears after so many years of his callous destructiveness. But I tire of hearing the term "lame duck." It is ableist, of course, yet so ubiquitous most people don't think about it.

A "lame duck" is, literally, one that cannot keep up with the flock, and the primary definition provided by Merriam-Webster is "one that is weak or that falls behind in ability or achievement."

According to The Phrase Finder, the earliest recorded use of the term as a metaphor dates to 1761 and investors in the London Stock Exchange who couldn't pay their debts. Along with "bull market" and "bear market," "lame duck" was part of 18th-century stock trading lingo. How that came to be may or may not have something to do with the British game cricket:

In Horace Walpole's Letters to Sir Horace Mann, 1761, we have:

"Do you know what a Bull, and a Bear, and a Lame Duck are?"

In 1771, David Garrick, in Prologue to Foote's Maid of Bath wrote:

"Change-Alley bankrupts waddle out lame ducks!"

In 1772, the Edinburgh Advertiser included:

"Yesterday being the settling day for India stock, the bulls had a balance to pay to the bears to the amount of 23 per cent. Only one lame duck waddled out of the alley, and that for no greater a sum than 20,000."

We are still familiar with the terms 'bull market' and 'bear market', referring to rising and falling markets respectively, but 'lame duck' in the specifically stock trading context is now little used.

Why should someone who has no assets be called a 'duck'? Could it be related to the cricketing term, 'out for a duck' - used when a batman is out without scoring any runs? It seems not. That term is much later and refers to the zero on the scoreboard being similar to a duck's egg. First used in 1867, in G. H. Selkirk's Guide to Cricket Grounds:

"If he makes one run he has 'broken his duck's egg'."

The term made its way to American politics, with the first reference here in 1863 and the first presidential reference about Calvin Coolidge in 1926. Back then, out-going politicians had about 60 days longer to wreak havoc before newly elected representatives took office. The 20th Amendment to the U.S. Constitution, also sometimes referred to as the Lame Duck Amendment, shortened that time to it's current length, with new Congressional members taking office on January 3 and the president on January 20 following November elections.

"Lame duck" is particularly ableist since its current use refers not only to the decreased political power of elected officials who are slated to be replaced but also to the lack of accountability those politicians face. The daily "Quackitude" report on The Rachel Maddow Show on MSNBC, for example, covers both instances where Bush seems to be conceding his position to Obama already and the executive orders that reveal a gross misuse of power by bypassing legislative approval of things like uranium mining along the Colorado River.

I love Maddow and her show, but here's the relevant part of the November 7 show transcript that puts it all together under "Lame Duck Watch":
MADDOW:

We elected a new president this week, but there are still 10 scary weeks left of the Bush administration when anything can happen and most likely will.

And so we are back with another installment of our public service series, the RACHEL MADDOW SHOW "Lame Duck Watch" because somebody has to do it.

On the agenda at 1600 Pennsylvania Avenue, in the last couple days, nearly nobody watched. Scrapping Mid-East peace. Now, there's an idea. About a year ago, the Bush administration invited officials for nearly 50 countries to Annapolis, Maryland for a meeting with Israelis and Palestinians to try to forge peace before the end of the Bush era.

It widely considered the president's attempt to save a sliver of his otherwise, rather soily international legacy. At the time, those talks were deemed a success by Secretary of State Condoleezza Rice. And the administration vowed to keep working on this until Bush left office. They said they would get a deal before the end of the year.

Well, yesterday, the administration announced, forget it. They called off plans for any further talks before the end of the year. Legacy shmegacy. We've got an environment to wreck while we still have a chance.

They didn't say that thing about the environment, but yes. President Bush's Interior Department is busy relaxing environmental protection rules on mining for uranium within three miles of the Grand Canyon, you know, where the Colorado River runs, the one that provides drinking water for Phoenix, Vegas and L.A.

"Mommy, I didn't ask for lemonade. It's not lemonade, Sweetie. It's the seepage off those radioactive tailings. How much better would it be if January 20th were like tomorrow?

Daily, Maddow links impotent power with irresponsible use of what power Bush has left. So does everyone else. So being a "lame duck" is not just about being ineffective (which is ableist enough by itself), it's also about being an asshole.