Showing posts with label mental illness/health. Show all posts
Showing posts with label mental illness/health. Show all posts

Monday, January 09, 2012

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.

Tuesday, December 09, 2008

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.

Thursday, December 04, 2008

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.

Friday, November 21, 2008

Friday Music: Warren Zevon

Warren Zevon would be an appropriate music post on The Gimp Parade because he was a well-known musician with obsessive-compulsive disorder, or because he was dogged by alcoholism for much of his adult life, or because he died in 2003 of mesothelioma (a cancer associated with asbestos exposure) after documenting his decline in health with a final album and a VH-1 documentary. But really, I just love his music.

This YouTube video of a 1978 live studio performance of "Werewolves of London" is intercut with brief shots of a werewolf man dressed in a tux and cape. Zevon plays a grand piano and sings while a four-man backup band stands in the background.



The lyrics:

I saw a werewolf with a Chinese menu in his hand
walkin' through the streets of Soho in the rain.
He was lookin' for the place called Lee Ho Fooks,
gonna get a big dish of beef chow mein.

Chorus:
Aaahoo, werewolves of London
Aaahoo(2x)

Ya hear him howlin' around your kitchen door,
ya better not let him in.
Little old lady got mutilated late last night,
werewolves of London again.

Chorus 2x

He's the hairy, hairy gent, who ran amok in Kent.
Lately he's been overheard in Mayfair.
You better stay away from him, he'll rip your lungs out Jim.
Huh, I'd like to meet his tailor.

Chorus 2x

Well, I saw Lon Chaney walkin' with the queen, doing the werewolves of London.
I saw Lon Chaney Jr. walkin' with the queen, doin' the werewolves of London
I saw a werewolf drinkin' a pina colada at Trader Vic's
And his hair was perfect.

ahhhooooo, werewolves of London
Draw blood
Zevon's wiki reads like a Who's Who of famous musicians, actors, and authors. His career sort of died several times, and he made come-back albums several times as he worked through addictions and other personal struggles. When he learned he had cancer, he began one final album and spent his last year recording it with good friends in a kind of long, public goodbye. He appeared as the only guest on The David Letterman Show about 11 months before his 2003 death, candidly discussing his short future and singing some of his best known songs.

YouTube video of Zevon on stage playing guitar and singing "My Shit's Fucked Up." Here are the lyrics, which he wrote several years before his cancer diagnosis:
Well, I went to the doctor
I said, "I'm feeling kind of rough"
"Let me break it to you, son
"Your shit's fucked up."
I said, "my shit's fucked up?
"Well, I don't see how--"
He said, "The shit that used to work--
"It won't work now."

I had a dream
Ah, shucks, oh, well
Now it's all fucked up
It's shot to hell

Yeah, yeah, my shit's fucked up
It has to happen to the best of us
The rich folks suffer like the rest of us
It'll happen to you

That amazing grace
Sort of passed you by
You wake up every day
Hang your head and cry
Yeah, you want to die
But you just can't quit
Let me break it on down:
It's some fucked up shit
YouTube video of Zevon on a stage alone with a guitar singing "Lawyers, Guns and Money" from a 1994 BBC Christmas program titled Words and Music: American Writers.

YouTube video, in four parts, of the one-hour David Letterman episode with Zevon as his sole guest, just short of a year before his death. Parts one, two, three, and four. Sorry, I don't have a transcript, and I don't have the typing ability to whip up this length of dialogue here. I can offer the brief description from Wikipedia:
On October 30, 2002, Zevon was featured on the Late Show with David Letterman as the only guest for the entire hour. The band played "I'll Sleep When I'm Dead" as his introduction. Zevon performed several songs and spoke at length about his illness. Zevon was a frequent guest and occasional substitute bandleader on Letterman's television shows since Late Night first aired in 1982. He noted, "I may have made a tactical error in not going to a physician for 20 years." It was during this broadcast that Zevon first offered his oft-quoted insight on facing death: "Enjoy every sandwich." He also took time to thank Letterman for his years of support, calling him "the best friend my music's ever had". For his final song of the evening, and his final public performance, Zevon performed "Roland the Headless Thompson Gunner" at Letterman's request. In the green room after the show, Zevon presented Letterman with the guitar that he always used on the show, with a single request: "Here, I want you to have this, take good care of it."
Other sources:

Review in the NYT of I'll Sleep When I'm Dead, the posthumous biography published by Zevon's ex-wife.

A interesting list of famous people with OCD

Thursday, November 20, 2008

Action Alert -- Update on Ray Sandford's forced electroshock "therapy"

Photo of Ray SandfordImage description: A color photo taken by a concerned citizen who visited Ray Sandford after hearing about his forced electroshock treatments. Ray is a 54-year-old white guy with wire-rimmed glasses and a neatly-trimmed, graying beard. He's wearing a blue knit earwarmer headband.

According to MindFreedom International, the source of my post last week on involuntary outpatient electroshock in Minnesota, Ray Sandford's doctor has decided to "skip" a week of the torture. Here's the full update, posted as offered at MindFreedom International:

Ray Alert #3 - 16 November 2008

First the good news.

Within days of MindFreedom launching its Ray Campaign on 7 November 2008 to stop the weekly involuntary outpatient electroshock of Ray Sandford, his doctor has decided to "skip a Wednesday."

Ray says that this coming Wednesday, 19 November 2008, for the first time in months, Ray will not be escorted against his will, under court order, from his Minnesota home out in the community to his 34th involuntary outpatient electroshock.

So there's a reprieve for Ray.

For one week.

The bad news is that Ray's doctor said Ray's forced outpatient electroshocks will resume on Wednesday, 26 November 2008, the day before the USA holiday of Thanksgiving.

Ray said his involuntary shock will then continue every other week.

We don't know if the one-week reprieve is because of the MindFreedom campaign, but we know MindFreedom News readers are having an impact.

Since the MindFreedom first alert went out nine days ago, on 7 November 2008:

  • Many people from all over the world have e-mailed and phoned the offices of the Governor of Minnesota, along with social service agencies, media, and the hospital where Ray receives his electroshock against his expressed wishes.
  • For the first time, thousands of people are now aware of the existence of IOE -- Involuntary Outpatient Electroshock.
  • A few national and local media are now actively investigating.
  • Several advocacy agencies and human rights organizations are expressing concern and getting involved.
  • Several volunteer attorneys are now in touch to provide assistance.
  • Volunteers are visiting Ray and sending him their support, and Ray tells us he is grateful. One volunteer took the photo of Ray shown here.
  • MindFreedom's "Zapback" e-mail list is coordinating the campaign.
  • A disability professor and her class of students have called up Ray and are taking on his campaign as a project.
  • And more.

Thank you, everyone.

Keep up the pressure and the support!

First, keep phoning and e-mailing, especially if you have not so far. Show there is national and international concern!

Here are the links to the original two MindFreedom alerts, which have information about how to e-mail and phone the Governor of Minnesota, and how to write or visit Ray:

7 Nov: Alert #1
http://www.mindfreedom.org/shield/ray-sandford

12 Nov: Alert #2 - Governor Phone-In Campaign
http://www.mindfreedom.org/shield/pawlenty-electroshock

Second, help MindFreedom answer the main mystery.

Despite all this public interest the question remains, "What is Governor Pawlenty's position on Minnesota laws allowing involuntary outpatient electroshock?

Is this Governor, who campaigns for "limited government," for such laws or against them?

Unfortunately, the Governor's office has not responded to any of the many e-mails or phone calls requesting his policy position. The Governor's office is immediately forwarding citizen inquiries to a voice mail, and then not replying to the voice mail.

We need media to ask the Governor for us. Please forward this alert to all media, small and large, from newspapers to bloggers.

Media can direct questions to:

Brian McClung

Director of Communications for Minnesota's Governor

phone: (651) 296-0001.

Media ought to ask, "What is Governor Pawlenty's position on Minnesota laws allowing involuntary outpatient electroshock?"

Sometimes the Governor's office is re-directing calls to the Minnesota Department of Human Rights. At first that sounds good. But this office says it is only focused on determining whether narrow discrimination complaints are legally valid. A spokesperson said this department makes no statements about policy.

This Minnesota agency said they are planning a major one-day human rights conference and forum on 5 December. One barrier is the "forum" costs $200.

For information on this Minn. Dept. of Human Rights, and their "forum," click here:

http://www.mindfreedom.org/shield/ray/minnesota-human-rights-conference

You can also keep up with some of the latest developments about the Ray Campaign on the MindFreedom blog by MindFreedom director David Oaks, here:

http://www.mindfreedom.org/mfi-blog

Disclaimer: Because the State of Minnesota won't reply, portions of these alerts are based on Ray's personal statements. By Ray's own admission, he now has severe memory problems. Therefore, journalists and others may want to find a second source to confirm accuracy.

*****

And a suggestion from me:

After you call or email the State of Minnesota (numbers provided by MFI):
From anywhere in the world phone (651) 296-3391.

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

You can leave a message at any time. You can reach staff any non-holiday weekday from 8:00 am to 4:30 pm Central Time.

Call any day, but especially call on Wednesdays.
Add Ray Sandford to your holiday card list:

Ray is open to visitors and supportive postal mail:

Ray Sandford
Victory House
4427 Monroe St.
Columbia Heights, MN 55421-2880 USA

Wednesday, November 12, 2008

Forced electroshock in Minnesota

I've copied the following in its entirety from The Trouble with Spikol:

URGENT: Forced Electroshock

MindFreedom International — 7 November 2008
Human Rights Alert: Involuntary Electroshock

by David W. Oaks, Director, MindFreedom International

The past Wednesday morning after the historic USA election what were you doing?

I know what Ray Sandford, 54, was doing.

Each and every Wednesday, early in the morning, staff shows up at Ray’s sheltered living home called Victory House in Columbia Heights, Minnesota, adjacent to Minneapolis.

Staff escorts Ray the 15 miles to Mercy Hospital. There, Ray is given another of his weekly electroconvulsive therapy (ECT) treatments, also known as electroshock. All against his will. On an outpatient basis.

And it’s been going on for months.

Ray says the weekly forced electroshocks are “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?” Instead, Ray phoned his local library’s reference desk to ask about human rights groups, and the librarian referred him to MindFreedom International.

Ray called me at our office here at MindFreedom International about two weeks ago. At first I wasn’t sure I believed him.

Of course, MindFreedom International has documented proven cases of electroshock against the expressed wishes of the subject all over the world, including in the USA. MindFreedom succeeded in having the United Nations World Health Organization call in writing for a global ban on all involuntary electroshock.

But this is the first time I’ve been on the phone with someone getting court-ordered forced shock while living out in the community, on an outpatient basis.

This is the ultimate double whammy. I confirmed Ray’s story by calling two staff at Victory House as well as his court-appointed conservator, Tonya Wilhelm of Luthern Support Services of Minnesota.

Ms. Wilhelm said, “We are following the letter of the law.” She said the State of Minnesota had secured a variety of court orders that require Ray to have forced electroshock against his expressed wishes. Ms. Wilehlm says it’s all legal and she can’t do anything about it.

Krista Erickson, chair of MindFreedom’s Shield Campaign, sees it differently. “This is terrible. This is a serious human rights violation that should stop. I hope MindFreedom members and supporters speak out. Even if Minnesota is following the letter of the current law, the law ought to be changed. And Ray has not had the legal power to appeal to higher courts.”

I pointed out to Conservator Wilhelm that the public — when they find out about forced electroshock — is passionately opposed to their taxpayer money being used to force such brutality on citizens. Ms. Wilhelm did let slip that what is happening to Ray — involuntary outpatient electroshock — is not that uncommon in Minnesota.

But when Ms. Wilhelm found out we at MindFreedom are issuing one of our public human rights alert to you and others, at Ray’s repeated request, she said something chilling.

Ms. Wilhelm claimed she had a legal right to stop MindFreedom! Ms. Wilhelm told me, “Only I can give you permission legally to say anything publicly about this.”

I pointed out we are not a medical facility, and that if she falsely claims we’re doing anything illegal then this is defamation. Which really is illegal. Ms. Wilhelm laughed loudly in the phone, said “let our lawyers talk,” and hung up on me. I hope she hung up to read the First Amendment.

Let’s disobey Ms. Wilhelm!

Spread Ray’s alert far and wide! Speak out against this electrical torture, now!

Because… Remember… While the world marvels at the power of USA democracy:

If it’s Wednesday morning, then Ray Sandford is being led from his home — which is supposed to be his castle — to get another weekly forced procedure that can cause brain damage and wipe out memories.

Want to do something? Follow the jump.

Mind your freedom. Disobey Ray’s conservator now!

Forward this alert to all appropriate places on and off the Internet, IMMEDIATELY!

And take the *below* actions. Thank you. Ray and I are counting on you!

~~~~~~~~~~~~

* * * ACTION * * * ACTION * * * ACTION * * *

You can do this in a moment. It’s free! DO IT NOW!

E-mail your firm but polite message to Minnesota Governor Tim Pawlenty.

SAMPLE MESSAGE — your own words are best:

“Investigate the weekly involuntary outpatient electroshock of Ray Sandford. Every Wednesday morning, MindFreedom says Ray is brought from Victory House in Columbia Heights, Minnesota to Mercy Hospital for forced electroshock. Stop all forced electroshock today! Taxpayer money should not fund torture!” [Your name/contact.]

E-mail address: tim.pawlenty@state.mn.us

Or use this handy web form

~~~~~~~~~~~~

* * * ADDITIONAL ACTIONS TO SUPPORT RAY! * * *

1) E-mail a complaint to Luthern Social Services of Minnesota (LSSMN) about Ray’s conservator.

Sample message:

“Investigate allegations that LSSMN employee Tonya Wilhelm tried to stop a public human rights alert by MindFreedom International about her client, Ray Sandford, who is receiving weekly outpatient involuntary electroshock at Mercy Hospital in Minneapolis. If verified, please reprimand, fire and replace Ms. Wilhelm, and please place this in her permanent personnel record. Please support human
rights.” [Your name/contact.]

Use LSSMN’s web page

Or phone Luthern Social Services at: (218) 726-4888

You can copy your message to headquarters of The Evangelical Lutheran Church in America (ELCA):

info@elca.org

From ELCA’s web site about their church: “It’s a story of a powerful and patient God who has boundless love for all people of the world, who brings justice for the oppressed.”

More right here

2) E-mail a complaint to Allina Hospital and Clinics, owner of Mercy Hospital.

Sample message:

“Investigate allegations that your patient Ray Sandford of Victory House is receiving involuntary outpatient electroconvulsive therapy against his will each Wednesday at Mercy Hospital.”

Use this web page

Or phone: (763) 236-6000

3) Ray is open to visitors and supportive postal mail:

Ray Sandford
Victory House
4427 Monroe St.
Columbia Heights, MN 55421-2880 USA

MindFreedom will print out and mail to Ray some of your e-mail messages to the Governor and others, and put some on the web. E-mail a copy of what you write to news@mindfreedom.org.

~~~~~~~~~~~~

AND ONE MORE THING!

Say “no” to mental health system censorship!

Disobey Ray’s conservator now!

PLEASE forward this public human alert to all appropriate places on and off the Internet, IMMEDIATELY! Thank you!

Friday, October 10, 2008

Friday Music: Kristen Hersh















Kristen Hersh began performing in the college-radio band Throwing Muses at age 14. She's been writing music, performing and touring her whole life, with the Muses, as a solo act, and with her other band 50 Foot Wave. (Throwing Muses included Hersh's half-sister, Tanya Donnelly, who went on to form the Breeders, Belly, and have a solo career herself.)

Photo description: The photo shows Hersh, standing with arms crossed in front of her, looking to the camera. She's wearing a black sweater and her hair is blonde here. She has startling blue eyes.

Hersh has been public about her troubles with mental illness, both difficulty with diagnosis and how her mental processes relate to her music. From a March 2008 interview with Scotland on Sunday, Hersh explains how she writes songs:

“It’s not a calming endeavour,” she says. “It’s intense. When it first began it was considered hallucinations, but no amount of medication would make the songs go away. I disagreed with the doctors’ diagnosis of schizophrenia and talked them down to bipolar which, if nothing else, kept me off of those scary meds that they had put me on.”

Why did she not accept that she was schizophrenic? “I believed in what I was hearing. And I still do. But that is one argument you can’t push through the medical community – that just because they don’t hear it doesn’t mean it isn’t there. The music doesn’t seem to be in me or come from me. I truly believe that it’s there and I’m just copying it down.”

Many people believe that there is a direct correlation between bipolar disorder, or manic depression as it was once known, and the artistic imagination; the rather romantic theory is that the condition actually drives creativity. But Hersh doesn’t buy this. “I have never had a good experience with mania,” she says. “It’s also hard for me to relate to the idea of depression as a waifish sadness. It was more of a shameful darkness. And I would certainly never write any songs when I was depressed. I don’t want creativity to be associated with illness in any way.”
And from a 1988 interview in Big City Redneck, Hersh says:
Personally I don’t want to think that you could make art from mental illness, you should only make art or science from health. At the same time I have to admit I did turn out bi-polar. But I think they get it backwards, I don’t think I play music because I’m bi-polar. Music needs to be played and in order to do it I have to be bi-polar. If that makes sense. It doesn’t does it? I don’t know if I’m expressing mental illness in my music.
Hersh is part of CASH (Coalition of Artists and Stake Holders), which, as I understand it, is an endeavor to remove the middle men of the music business from the equation so that artists and their audiences can interact more freely. One example of how this works is that tracks of Hersh's latest music are available at the CASH site, and fans can download them for free (if you're a cheapskate), but easily donate what they believe the music is worth directly to the artists using PayPal.

YouTube videos:

A favorite of mine, from Hersh's first solo album Hips and Makers, "Your Ghost" with Michael Stipe of R.E.M. Here's Hersh's latest band, 50 Foot Wave, playing an updated version of the song. And here's an acoustic live performance by Hersh alone in Athens earlier this year.

"Gazebo Tree" -- I saw Hersh sing this on a Lilith Fair tour back in the '90s. This is a 2007 live performance in London.

"A Loon" -- From Hips and Makers, this is a 1994 video filmed in Amsterdam. Beautiful cello played by Martin McCarrick. The lyrics for "A Loon":
Some store
I'm not going back there anymore
Wandered in
Don't think I'll do that again
No I don't think I'll do that again

I swear
Look at me cross-eyed and I don't know what to do
No I don't know what to do
Crazy loon

There's a room in his pallet
There's a pillow for his head
Sees an offshoot in his bottle
When he wants to see me dead
Heirlooms A loon
Never thought I'd see that silly grin
Never thought I'd see that fool again
Never thought I'd love that lunatic

Nothing left to dance around
What a hero
What a black and blue bird
What a loon, A loon
What a loon, A loon
"Me and My Charms" -- Another of my personal favorites, again from Hips and Makers. This is a 2007 live performance from Pittsburgh.

"Sundrops" -- Another Hips and Makers song. A live TV performance from 1994, and also a great example of Hersh's guitar skills and style.

"In Shock" -- From Hersh's solo album, Learn to Sing Like a Star.

"Dizzy" -- A Throwing Muses tune from their Hunkpapa LP. A 1989 live performance.

"Bright Yellow Gun" -- The video for the Throwing Muses song from University.

"Clara Bow" -- The video from her band 50 Foot Wave's album Golden Ocean.

"Pneuma" -- The video from the Golden Ocean song. The video is really a bunch of blurs, but the audio is worth hearing to see how 50 Foot Wave differs from her solo work.

Other links:

Hersh's blog.

An NPR World Cafe interview in audio where Hersh also sings. The interviewer gets the name of her album "Learn to Sing Like a Star" wrong twice (he says "Learn to Sing Like the Stars" and "Learn to Sing Like a Girl" -- ack!), even as he's asking about the origin of the title, but Hersh is interesting to hear talk about her life and creative process.

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

Last June, Liz Spikol at The Trouble with Spikol compiled a list of famous people with mental health issues. It's an interesting list of successful artists and actors that I'll probably mine for other Friday Music posts here in the future.

Sunday, October 05, 2008

A handy guide to your presidential candidates and their senatorial records on disability

Provided by the Ohio Legal Rights Service. (Link leads to a chart showing the positions of both McCain and Obama on a wide variety of disability issues, both professed positions and voting records as of this September.)

An update for that chart: Tucked into the financial bailout bill that just became law is the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008, listed in the above chart as the Paul Wellstone Mental Health and Addiction Equity Act that previously McCain had opposed and Obama had supported. As an add-on to the bailout bill, both candidates voted for it.

Heh.

Tuesday, January 15, 2008

Phoning It In






Last month, the state of Massachusetts issued a report on an August 2007 incident at one of the group homes of the Judge Rotenberg Center (JRC) where, on the basis of a phonecall, two boys were awakened in the night and repeatedly given electric shocks by the adults responsible for their care. If you're not already familiar with the JRC in Massachusetts or the aversive therapy used there on institutionalized disabled children, Mother Jones provides details in an article published this past September.

Eight states pay up to $200,000 per student, per year, to send otherwise "unplaceable" children with autism, psychological and behavioral disorders to the residential institution that uses aversive therapy to control many of its young inmates. Very generally, aversive therapy involves the use of a wide range of unpleasant stimuli to discourage specific behaviors. At JRC, aversives include electric shocks, food deprivation and isolation. On children.

The phonecall that led to the nighttime torture of the two boys turned out to be a prank. From the Boston Globe:

The report says none of the six staff members in a Stoughton residence run by the Judge Rotenberg Educational Center on the night of Aug. 26 acted to stop the harrowing events for three hours, despite ample reasons to doubt the validity of the caller's instructions to wake the boys in the middle of the night and administer painful shock treatments, at times while their arms and legs were bound.

The caller said he was ordering the punishments because the teenagers had misbehaved earlier in the evening, but none of the home's staff had witnessed the behavior that the caller cited. As the two boys' screams could be heard throughout the house, near-mutiny erupted among the other boys, who insisted that the accused teenagers had violated no rules. One boy even suggested the call was a hoax, according to the report by the Massachusetts Department of Early Education and Care, which licenses group homes.

The staffers, inexperienced and overworked, were described as concerned and reluctant, yet nobody verified the orders with central office, nor did anybody check treatment plans for the two teenagers to be sure they were permitted to receive that degree of shock therapy.
The damage was done before the staff at the JRC realized their "error":
By the time a call was finally placed to the central office and staff members realized their mistake, one teenager had received 77 shocks, well in excess of what his treatment plan allowed, and the other received 29. One boy was taken to the hospital for treatment of two first-degree burns.
The full account described by the Boston Globe is harrowing and beyond awful. The result of the state report is the suspension of seven JRC employees. But what I find telling is that because of the state investigation the following changes are supposedly being implemented at the JRC:
  • Expanded training for staff -- Many of the suspended employees had been working at the JRC for less than three months at the time of the August incident. High employee turnover is also suggested by Google search of the center, which pops up numerous ads for employment.
  • Institution of new telephone verification procedures -- Electric shock orders via telephone will continue to be part of the official procedure of aversive therapy, as is the incredibly extensive video surveillance of every moment of inmates' lives.
  • Elimination of delayed punishment -- On its own, prior to this incident, awakening inmates through administration of electric shock was not a violation of procedure? Children were routinely hooked up to shock equipment even while they tried to sleep, apparently.
Supporters of JRC and its aversive therapy say it effectively changes behavior. Of course it does. Extended torture with no end in sight tends to do that. One of the axioms of torture is that anyone can be broken, given time and cruel enough methods. There are some inmates of JRC receiving electric shock that have been there for decades.

This post is part of a Blogging Against Aversives event. You can find links to writing from other bloggers on the topic here. Or check out Amanda Baggs' extensive and well-indexed writing on aversives, behavior modification, JRC, and other related topics at Ballastexistenz. This post of Amanda's is especially informative. Feel free to add links of other writings on this in comments.

Cross-posted at Alas, A Blog

Friday, December 21, 2007

Friday Music: Sinéad O'Connor

This is what Sinéad O'Connor actually said this past September, according to a Minneapolis Star Tribune article:

"I'd been suffering from depression for some years, which I don't think is a surprise for anyone to learn," she said. "When my third child was 5 months old, it got more severe. It's all under control, and I'm on the drugs.

"My life is much better. I've settled down a lot more. I have a lovely boyfriend, and I'm happy with my kids. It's a much more normal, kind of quiet life."
And yet, this is how that very article begins:
This may be hard to believe, but Sinéad O'Connor says she is trying to live a normal life.

That's the same O'Connor who tore up the pope's photo on "Saturday Night Live," bore four children with four different fathers, declared her lesbianism and then denied it, was ordained a priest, made a record of reggae tunes and now one of songs about God.

To prove she's trying to be normal, the Irish pop star promises to sing some oldies, including her classic, "Nothing Compares 2 U," when she performs Monday at the Pantages Theatre.
There's a lot that could be unpacked there -- normalcy versus political protest of Catholicism, normalcy versus motherhood via serial monogamy, normalcy versus sexual exploration, normalcy versus religious exploration and normalcy versus musical exploration. Admittedly, O'Connor's turbulent past has played out publicly to the curiosity of many. And, yes, she discussed finally being diagnosed as bipolar on Oprah this past fall, but I've always thought of O'Connor and her passionate music and politics as intrinsic parts of her character rather than symptoms of being abnormal. You know, part of what makes her voice so original and her music so captivating.


Other good linkage:

Recent SFGate interview about bipolarism, depression, religion and O'Connor's newest album Theocracy

Blog commentary at The Neurocritic


Here's YouTube video of one of my early favorites from The Lion and The Cobra. "Troy" performed live at the 1988 Pinkpop Festival, just her and her acoustic guitar before an audience of thousands. The song seems to be about a lover, and refers to both the legend of the ancient Greek city of Troy and W.B. Yeats' poem "No Second Troy."

Lyrics:

I'll remember it
And Dublin in a rainstorm
And sitting in the long grass in summer
Keeping warm
I'll remember it
Every restless night
We were so young then
We thought that everything
We could possibly do were the right
Then we moved
Stolen from our very eyes
And I wondered where you went to
Tell me when did the light die
You will rise
You'll return
The phoenix from the flame
You will learn
You will rise
You'll return
Being what you are
There is no other Troy
For you to burn

And I never meant to hurt you
I swear I didn't mean
Those things I said
I never meant to do that to you
Next time I'll keep my hands to myself instead
Oh, does she love you
What do you want to do?
Does she need you like I do?
Do you love her?
Is she good for you?
Does she hold you like I do?

Do you want me?
Should I leave?
I know you're always telling me
That you love me
Just sometimes I wonder
If I should believe
Oh, I love you
God, I love you
I'd kill a dragon for you
I'll die
But I will rise
And I will return
The Phoenix from the flame
I have learned
I will rise
And you'll see me return
Being what I am
There is no other Troy
For me to burn

And you should've left the light on
You should've left the light on
Then I wouldn't have tried
And you'd never have known
And I wouldn't have pulled you tighter
No I wouldn't have pulled you close
I wouldn't have screamed
No I can't let you go
And the door wasn't closed
No I wouldn't have pulled you to me
No I wouldn't have kissed your face
You wouldn't have begged me to hold you
If we hadn't been there in the first place
Ah but I know you wanted me to be there oh oh
Every look that you threw told me so
But you should've left the light on
You should've left the light on
And the flames burned away
But you're still spitting fire
Make no difference what you say
You're still a liar
You're still a liar
You're still a lawyer


Wednesday, December 19, 2007

"Ransom notes" ad campaign ends

Ari Ne'eman, president of the Autistic Self-Advocacy Network (ASAN) that led the protest against the NYU Child Study Center's "Ransom Notes" ad campaign, announces:

I am pleased to inform you that this afternoon the NYU Child Study Center announced that they will be ending the "Ransom Notes" ad campaign in response to widespread public pressure from the disability community. You can read that announcement here (at the NYU Child Study Center's website). The thousands of people with disabilities, family members, professionals and others who have written, called, e-mailed and signed our petition have been heard. Today is a historic day for the disability community. Furthermore, having spoken directly with Dr. Harold Koplewicz, Director of the NYU Child Study Center, I have obtained a commitment to pursue real dialogue in the creation of any further ad campaign depicting individuals with disabilities. We applaud the NYU Child Study Center for hearing the voice of the disability community and withdrawing the "Ransom Notes" ad campaign.

Twenty-two disability rights organizations came together to ensure the withdrawal of this advertising campaign. Our response to this campaign stretched continents, with e-mails, letters and phone calls coming from as far away as Israel, Britain and Australia. The disability community acted with a unity and decisiveness that has rarely been heard before and we are seeing the results of our strength today. Our success sends an inescapable message: if you wish to depict people with disabilities, you must consult us and seek our approval. Anything less will guarantee that we will make our voices heard. We are willing to help anyone and any group that seeks to raise awareness of disability issues, but those efforts must be done with us, not against us. This is a victory for inclusion, for respect and for the strength and unity of people with disabilities across the world. It is that message that has carried the day in our successful response to this campaign. Furthermore, we intend to build on this progress, not only by continuing a dialogue with the NYU Child Study Center and using this momentum to ensure self-advocate representation at other institutions as well, but also by building on the broad and powerful alliance that secured the withdrawal of these ads in the first place. We are strongest when we stand together, as a community, as a culture and as a people.

Thank you to all of you who have made this victory possible. Remember: "Nothing About Us, Without Us!"
It didn't look promising at first. This past weekend the images of the ads at the Child Study Center's website were briefly taken down, but they were back up when the New York Times Sunday coverage of the ads quoted Koplewicz as saying the Center was determined to "stick with it and ride out the storm" and even expand the campaign to four other cities soon.

Kristina Chew, PhD., who blogs at Autism Vox and was also quoted in the NYT article, has been providing relentless commentary, coverage and linkage to dozens of blogs writing about the ads. To follow those posts chronologically go here, here, here, here, here and here.

Or check out Furious Seasons where Philip Dawdy makes some interesting connections in noting that Koplewicz co-authored a study of Paxil for the pharmaceutical company Glaxo SmithKline that apparently exaggerated benefits and downplayed adverse effects in treating adolescent depression. Koplewicz is one of dozens of co-authors of that study, but Dawdy wrote earlier this year:
"Some very smart people have taken on many of the issues around Study 329 and Paxil/Seroxat and, based upon the evidence, I'd have to say that it's fair to assert that none of us in the patient world should trust anyone who had a hand in the study (unless they want to suddenly recant the work) on absolutely anything they say about mental illness. At a minimum, we should be wildly skeptical of any claims they make."
Dawdy hasn't been the only one to speculate about what corporate interests might have connections to the Ransom Notes ad campaign. Many commenters to the NYT article wondered about possible pharmaceutical backing for the ads, though I've seen absolutely no direct evidence of this. It seems to have been yet another case of do-gooders offering a message that didn't take into account the experiences and feelings of those they set out to help.

In the Center's announcement of the end of the ad campaign, Koplewicz writes:
Though we meant well, we've come to realize that we unintentionally hurt and offended some people. We’ve read all the emails, both pro and con, listened to phone calls, and have spoken with many parents who are working day and night to get their children the help they need. We have decided to conclude this phase of our campaign today because the debate over the ads is taking away from the pressing day-to-day work we need to do to help children and their families. They are and remain our first concern.

Our goal was to start a national dialogue. Now that we have the public’s attention, we need your help. We would like to move forward and harness the energy that this campaign has generated to work together so that we do not lose one more day in the lives of these children. We hope you will partner with us to bring the issues surrounding child and adolescent mental health to the top of America's agenda. Work with us as we fight to give children and their families equal access to health insurance, remove the stigma that the term "psychiatric disorder" so clearly still elicits, and, most importantly, support the drive to make research and science-based treatment a national priority.

We invite all of you to continue this conversation online at a “town hall” meeting that we will hold early next year as we plan the next phase of our national public awareness campaign on child mental health. Look for details on our web site www.AboutOurKids.org.

Cross-posted at Alas, A Blog

Wednesday, December 12, 2007

The "ransom notes" campaign

We have your son.We are destroying his ability for social interaction and driving him into a life of complete isolation. It's up to you now…Asperger's Syndrome

The NYU Child Study Center has a new public education campaign designed to create awareness of psychiatric disorders. Ads appearing in magazines and on NYC billboards and kiosks are mock ransom notes signed by specific psychiatric disorders: ADHD, Asperger's Syndrome, autism, bulimia, depression and OCD. Here's the ad for bulimia (click on the ad below to see it larger or read text description here: Cut and paste words from magazine text form a ransom note: "We have your daughter. We are forcing her to throw up after every meal she eats. It’s only going to get worse. --Bulimia" Below the note the ad says, "Don't let a psychiatric disorder take your child" and gives info for the NYU Child Study Center.):

Text for the other ads reads:

We have your son. We will make sure he will no longer be able to care for himself or interact socially as long as he lives. This is only the beginning…Autism.

We are in possession of your son. We are making him squirm and fidget until he is a detriment to himself and those around him. Ignore this and your kid will pay…ADHD

We have taken your son. We have imprisoned him in a maze of darkness with no hope of ever getting out. Do nothing and see what happens…Depression

We have your daughter. We are making her wash her hands until they are raw, everyday. This is only the beginning…OCD
The NYU Child Study Center, celebrating its tenth year and the relaunch of its public information website AboutOurKids.org, says:
The idea behind the “Ransom Notes” is that, all too often, untreated psychiatric disorders are holding our children hostage. These disorders rob children of the ability to learn, make and keep friends and enjoy life.

"Ransom Notes" may be shocking to some, but so are the statistics: suicide is the third leading cause of death among young people ages 15 to 24, and serious emotional problems affect one out of 10 young people, most of whom do not get help. The strong response to this campaign is evidence that our approach is working. We understand the challenges faced by individuals with these disorders and their families. We hope to both generate a national dialogue that will end the stigma surrounding childhood psychiatric disorders and advance the science, giving children the help they need and deserve. We want this campaign to be a wake up call. Please join the dialogue.
And people are joining the dialogue. The Autistic Self-Advocacy Network (ASAN) has gathered 14 other disability rights organizations and issued a joint letter (.pdf file) calling for withdrawal of the ad campaign. (There's also a petition for anyone to sign in support of the ASAN joint letter and appeal.) In part, the letter reads:
While the “Ransom Notes” campaign was no doubt a well-intentioned effort to increase awareness and thus support for the disabilities it describes, the means through which it attempts this have the opposite effect. When a child with ADHD is described as “a detriment to himself and those around him,” it hurts the efforts of individuals, parents and families to ensure inclusion and equal access throughout society for people with disabilities. When individuals with diagnoses of autism and Asperger’s Syndrome are told that their capacities for social interaction and independent living are completely destroyed, it hurts their efforts for respect, inclusion, and necessary supports by spreading misleading and inaccurate information about these neurologies. While it is true that there are many difficulties associated with the disabilities you describe, individuals with those diagnostic categories do succeed – not necessarily by becoming indistinguishable from their non-disabled peers – but by finding ways to maximize their unique abilities and potential on their own terms.
and
Individuals with disabilities are not replacements for normal children that are stolen away by the disability in question. They are whole people, deserving of the same rights, respect, and dignity afforded their peers. Too often, the idea that children with disabilities are less than human lies at the heart of horrific crimes committed against them.
The letter also notes that the ad campaign supports the idea that people with these psychiatric disorders -- note that autism and Asperger's Syndrome are labeled psychiatric disorders here -- may be dangerous to others around them.

Does anyone else's mind jump to Columbine-type scenarios when they see "children" and "hostage" linked? Mine did.

h/t to Stephen Drake at Not Dead Yet

Cross-posted at Alas, A Blog

Prison suicides and mental illness

Piggybacking on Amp's report of recent NYT statistics on prisons and prisoners in the U.S. is the news that prisoner suicides in Massachusetts state prisons are nearly triple the rate in other states. From the first part of a three-part series in The Boston Globe:

Last year alone, seven inmates killed themselves, and another's attempt left him brain dead; four have taken their lives so far this year.

Department of Correction officials say the suicides are random and unrelated. But a Globe Spotlight Team investigation of the deaths and detailed reconstruction of how they occurred found that they were far from random.

Most of the suicides came after careless errors and dangerous decisions by correction officials and the staff at UMass Correctional Health. And the trail of violence is far wider than the number of dead would indicate, as hundreds more inmates each year have wounded themselves or attempted suicide.

In fact, such incidents are soaring.

So common has it been to find a man with a makeshift noose around his neck that some correction officers have taken to carrying their own pocket tools to cut them down. The tally of suicide attempts and self-inflicted injuries - 513 last year and more than 3,200 over the past decade - tells a story of deepening mental illness and misery behind the walls of the state's prisons, despite repeated calls for better training of officers and safer cells for mentally troubled inmates.
The entire series is here.

h/t to Liz at The Trouble with Spikol

Cross-posted at Alas, A Blog

Monday, November 12, 2007

Poetry Monday: Anne Sexton

It was Anne Sexton's birthday last week. I don't know if Hugo Schwyzer was aware of that when he posted about her work, particularly the poem "Live," but both the poem and his comments on mental illness are well worth a read.

Friday, September 28, 2007

Friday music: Don't Let Me Be Misunderstood by Nina Simone



Link to a YouTube video here. The images in the video present a montage of photos about the American Civil Rights movement, set to Nina Simone's 1964 recording of "Don't Let Me Be Misunderstood."

Lyrics to the song:

Baby, you understand me now
Yet sometimes you see that I'm mad
But don't you know that no one alive
Can always be an angel
When everything goes wrong you see some bad

But I'm just a soul whose intentions are good
Oh Lord, please don't let me be misunderstood

You know sometimes, Baby, I'm so carefree
With a joy that's hard to hide
And then sometimes again it seems that all I have is worry
And then you're bound to see my other side

But I'm just a soul whose intentions are good
Oh Lord, please don't let me be misunderstood

If I seem edgy I want you to know
That I never mean to take it out on you
Life has it's problems and I get more than my share
But that's one thing I never mean to do
Because I love you
Oh, Oh baby, I'm just human
Don't you know I have thoughts like anyone
Sometimes I find myself long regretting
Some little foolish thing some simple thing that I've done

Because I'm just a soul whose intentions are good
Oh Lord, please don't let me be misunderstood

Don't let me be misunderstood
I try so hard to, please
Don't let me be
While the seeds of the lyrics came from a songwriter's spat with a girlfriend, the song and Simone's recording are associated with the Civil Rights Movement. But a more personal view of her performance of the song might be seen with the knowledge that she was apparently bipolar:
Simone had a reputation in the music industry for being volatile and sometimes difficult to deal with, a characterization with which she strenuously took issue. In 1995, she shot and wounded her neighbour’s son with a pneumatic pistol after his laughing disturbed her concentration. She also fired a gun at a record company executive whom she accused of stealing royalties. It is now recognised that this ‘difficulty’ was not just the result of an overly-perfectionist rigor, but her raging outbursts and diva-like extremes were actually the result of a psycho-medical condition, most probably a bipolar disorder or borderline personality disorder. Simone reluctantly took medication for her condition from the mid sixties on. All this was only known to a small group of intimates, and kept out of public view for many years, until the biography Break Down And Let It All Out written by Sylvia Hampton and David Nathan revealed this secret in 2004.

Tuesday, July 24, 2007

Veterans sue U.S. government

On Monday, two veterans' organizations filed a nationwide class-action suit against the U.S. Department of Veteran Affairs (VA) for failure to help thousands of post-9/11 war veterans with post-traumatic stress disorder.

... Of the 1,400 VA hospitals and clinics scattered across the United States, only 27 have inpatient programmes for PTSD. This despite the fact that an estimated 38 percent of soldiers and 50 percent of National Guard who have served in Iraq or Afghanistan report mental health issues ranging from post-combat stress to brain injuries.

The VA also has a backlog of over 600,000 disability claims, and the average Iraq war veteran who files for disability must wait six months for an answer. If he or she files an appeal, it could take up to three years.
In the late '80s, I recall that homeless men in American cities were so often mentally ill Vietnam vets that it was practically an urban cliché. It seems we're heading down that same road again:
In their lawsuit, the veterans groups ask the federal courts to force the VA to clear the backlog of disability claims and make sure returning veterans receive immediate medical and psychological help. They also want the judge to force the VA to screen all vets returning from combat to identify those at greatest risk for PTSD and suicide.

An estimated 400,000 veterans sleep homeless on the streets of the United States. The VA estimates 1,000 former servicemembers under its care commit suicide every year.

Cross-posted at Echidne of the Snakes

Friday, June 22, 2007

Olmstead Anniversary and the "right to die"

Today, June 22, 2007, is the eighth anniversary of the Supreme Court decision in Olmstead v. LC and EW. LC and EW are Lois Curtis and Elaine Wilson, two women in Georgia who had spent most of their lives in institutions because of disabilities, despite it having been determined that they were each capable of living in a much freer environment. For disabled people, the Olmstead decision is comparable to Brown v. Board of Education in the way it has legally declared that segregation is an unacceptable public policy. And Olmstead was only possible because of the ADA.

Elaine Wilson died in 2004. Here, from The Atlanta Journal-Constitution article published at the time of her death:

In 2000, [U.S. District Court] Judge Shoob accepted a settlement that the state would guarantee the women community-based housing, training programs and employment.

At that hearing, Ms. Wilson testified to Judge Shoob: "When I was in the institution, I felt like I was in a little box and there was no way out."

Of the plaintiffs' testimonies, Judge Shoob said: "I was amazed. They were both so articulate. At a party after the hearing, they gave a talk about how it felt to take care of themselves and what a wonderful life they were leading. I went up on the podium and hugged each one of them. I'd never done that before."

Ms. Wilson had been shunted among institutions and shelters from age 15 and subjected to shock treatment and psychotropic drugs "that knocked her out and ruined her kidneys," said her mother, Jackie Edelstein of Atlanta.

"When I first met Elaine in 1999, it was very hard to see someone with a valuable talent," said Harriet Harris of Lithonia, executive director of Circle of Support Inc., which provided Ms. Wilson with caretakers. "She was very angry and defensive, having spent so many years fighting for survival. Like someone who had been wounded over and over, it was very hard to trust anyone."

Once Ms. Wilson was placed with a caretaker and given independence, her life changed dramatically.

"She blossomed," said Legal Aid attorney Sue Jamieson of Atlanta, who took on the case in 1995. "She took an interest in cooking and church and her personal appearance. She wanted to do advocacy for other people so [she] acquired training in presenting workshops and giving speeches.

"She developed a PowerPoint presentation that described her life. When I heard it, I was extremely moved. I had no idea that Elaine had acquired that level of sophistication. She had exploited her natural skills and abilities to a degree I would never have believed possible. It makes you wonder how many other people like Elaine are out there."
In 2004, on the fifth anniversary of Olmstead, activist Zen Garcia noted:
Olmstead v. LC & EW began as a civil rights case for two women who desired life in the community, but it ended up being a case representing the rights of all people, symbolizing to many of us the decades of legal government segregation and civil rights abuse.

We learned that, at the same time states were fining nursing homes for abuse and neglect, they were giving them bonus for keeping the cost per resident down. This caused an outcry from advocates across the nation.

Since incurring my own disability I had noticed a cycle of misrepresentation that condemned people like myself to nursing home placement. At the time, I was involved with the Georgia Department of Medical Assistance's Long Term Care Advisory Board, and I gave speeches at most of the DMA's Public Outreach Forums, declaring on several occasions that "It is not a lack of money that is the central issue when it comes to long term care, but whether states and corporations have the right to profit at the expense of the people."

Michael Gottesman, a Georgetown University Law Center professor, says it costs less money to provide for mentally disabled people in the community than in an institution. "The evidence is overwhelming in that regard," he insists. "It's politics that explains the states' resistance. It's a combination of the employees in these institutions don't want to lose their jobs, the administrators don't want to lose their kingdoms, and there are still lots of folks out in the community who are happy with continuing to lock these people up and keep them out of sight."
And, of course, Georgia is also where, in 1989, quadriplegic Larry McAfee languished in nursing homes and a hospital ICU for so long that he petitioned the courts for the right to die. Mainstream media mostly leapt on the story of a crip who felt he'd be better off dead, but as history professor and disability activist Paul Longmore writes:
He told Joe Shapiro of U.S. News and World Report that the worst thing about his disabillity was that people treated him as though he was "invisible." He told ABC's Nightline: "If you're a citizen or resident of Georgia and you become ventilator-dependent, you'd better be prepared to become an outcast unwanted by the state." His mother said that he was "thrown around like a bag of rotten potatoes that nobody even wants." "You're looked upon as a second-rate citizen," McAfee told Shapiro. "People say, 'You're using my taxes. You don't deserve to be here. You should hurry up and leave.'" "It gets to the point," he said, "where you realize that this is your life, . . . and in my case, it's not worth pursuing."
Yet, while McAfee petition to die was granted, he lives on. Significantly, the granting of his petition stated that permission for McAfee's ventilator to be turned off so that he would die would not be ruled a suicide, but the natural consequences of his paralyzing injuries many years earlier. This is just how deep the "better dead than disabled" idea runs: Allowing McAfee's wish to die through assistance in flipping a switch would've been legally ruled a natural consequence of a car accident.

But it turns out that being freed from the nursing home made McAfee's life worth living again. (Joseph Shapiro's report of McAfee's adventures is well-covered in his book, No Pity, an excellent, concise and readable account of the history of disabled people in the United States.) As for institutionalization and assisted suicide, the general consensus among disabled folks who speak on this is that being treated like a human being does that -- it makes life livable and worthwhile.


Photo description: The picture is by photographer Tom Olin from a recent ADAPT action in Washington, D.C. A black woman wearing a pink t-shirt solemnly holds a bright orange placard that reads "Real People, Real Choice" while dozens of demonstrators are visible behind her.

Monday, March 26, 2007

Poetry Monday: Their Sudden Tongues

Tulips
by Sylvia Plath

The tulips are too excitable, it is winter here.
Look how white everything is, how quiet, how snowed-in
I am learning peacefulness, lying by myself quietly
As the light lies on these white walls, this bed, these hands.
I am nobody; I have nothing to do with explosions.
I have given my name and my day-clothes up to the nurses
And my history to the anaesthetist and my body to surgeons.

They have propped my head between the pillow and the sheet-cuff
Like an eye between two white lids that will not shut.
Stupid pupil, it has to take everything in.
The nurses pass and pass, they are no trouble,
They pass the way gulls pass inland in their white caps,
Doing things with their hands, one just the same as another,
So it is impossible to tell how many there are.

My body is a pebble to them, they tend it as water
Tends to the pebbles it must run over, smoothing them gently.
They bring me numbness in their bright needles, they bring me sleep.
Now I have lost myself I am sick of baggage ——
My patent leather overnight case like a black pillbox,
My husband and child smiling out of the family photo;
Their smiles catch onto my skin, little smiling hooks.

I have let things slip, a thirty-year-old cargo boat
Stubbornly hanging on to my name and address.
They have swabbed me clear of my loving associations.
Scared and bare on the green plastic-pillowed trolley
I watched my teaset, my bureaus of linen, my books
Sink out of sight, and the water went over my head.
I am a nun now, I have never been so pure.

I didn't want any flowers, I only wanted
To lie with my hands turned up and be utterly empty.
How free it is, you have no idea how free ——
The peacefulness is so big it dazes you,
And it asks nothing, a name tag, a few trinkets.
It is what the dead close on, finally; I imagine them
Shutting their mouths on it, like a Communion tablet.

The tulips are too red in the first place, they hurt me.
Even through the gift paper I could hear them breathe
Lightly, through their white swaddlings, like an awful baby.
Their redness talks to my wound, it corresponds.
They are subtle: they seem to float, though they weigh me down,
Upsetting me with their sudden tongues and their colour,
A dozen red lead sinkers round my neck.

Nobody watched me before, now I am watched.
The tulips turn to me, and the window behind me
Where once a day the light slowly widens and slowly thins,
And I see myself, flat, ridiculous, a cut-paper shadow
Between the eye of the sun and the eyes of the tulips,
And I have no face, I have wanted to efface myself.
The vivid tulips eat my oxygen.

Before they came the air was calm enough,
Coming and going, breath by breath, without any fuss.
Then the tulips filled it up like a loud noise.
Now the air snags and eddies round them the way a river
Snags and eddies round a sunken rust-red engine.
They concentrate my attention, that was happy
Playing and resting without committing itself.

The walls, also, seem to be warming themselves.
The tulips should be behind bars like dangerous animals;
They are opening like the mouth of some great African cat,
And I am aware of my heart: it opens and closes
Its bowl of red blooms out of sheer love of me.
The water I taste is warm and salty, like the sea,
And comes from a country far away as health.