Nov 18, 2008 01:00 AM

original article: http://www.zenithcitynews.com/main/art20081118_1.htm

“Can you help me?” Those were almost the first words I heard from Samuel (not his real name).

“I’m getting shock treatments,” he said. “It would be nice to get some help, to get them to stop.”

Samuel asked that his name and identity be withheld. “[The group home where I live] is closely tied to the people who watch my money. I could end up on the street with nowhere to live and no money… As a consumer, I’d like people to know what’s going on. But having my name in the newspaper could have adverse effects.”

According to his mother, Marilyn, Samuel has been receiving weekly sessions of electroconvulsive therapy (ECT) since his discharge five months ago from the hospital, where he was being treated for bipolar disorder — a psychiatric condition characterized by extreme fluctuations in mood and behavior.

Popularized (and demonized) by the 1975 film, One Flew Over the Cuckoo’s Nest, ECT involves inducing seizure with a series of brief, controlled electrical pulses that stimulate the brain via electrodes on the patient’s head, according to the American Psychiatric Association (APA). It is generally used to treat severe depression, though is sometimes also used for bipolar or schizophrenia.

Patients are given muscle relaxants and anesthetized before the procedure, which takes about five to ten minutes. The APA claims that patients receiving ECT do not experience pain and, while they may feel temporary headaches, nausea, or confusion immediately afterwards, the APA firmly denies that ECT can cause brain damage or is ever used for behavior control.

However, Samuel says that these weekly sessions are being performed on him against his will, causing pervasive memory loss, and he is reaching out for help. “On the Internet,” he says. “I called the library and asked them to research it for me.”

Pam Hoopes, Director of the Minnesota Disability Law Center, confirmed that Samuel contacted their office and an investigator has been assigned to follow up on his complaint. She was unable to provide further details, citing attorney-client privilege.

Samuel also contacted MindFreedom International, an Oregon-based coalition of activists for human rights in the mental health system. The group is unaffiliated with any political or religious organization, including the Church of Scientology (famous for its anti-psychiatry work under various umbrella organizations).

“[Samuel] is about as focused and clear as anyone I’ve seen in 32 years,” says MindFreedom Director David Oaks. “Every Wednesday, he is escorted to [the hospital] and given forced shock – over the clear objections of an articulate person.”

Oaks considers this an outrage and, on November 7, he issued a “human rights alert,” calling on Governor Tim Pawlenty and Lutheran Social Service (LSS) to investigate the actions of Samuel’s guardian, Tonya Wilhelm (who deferred comment to her superiors).

Eric Jonstaard, Statewide Director of LSS of Minnesota, confirmed that the agency has guardianship of Samuel, but “I can’t comment specifically about [him] or his file… We would like to talk about our client’s case. We’re often put in a position where we’d like to justify our decisions… but that would be betraying our client’s confidence, especially when they’re vulnerable.”

LSS objected to MindFreedom issuing the alert. “As guardian, we are bound to protect our client’s best interest,” says Jonstaard. “It’s hard to see how putting his name and contact information on the Internet would help.”

“The alert makes it seem like we’re responsible,” he says. “But guardianship doesn’t have the scope of ECT. In Minnesota, there’s a separate hearing” and guardianship specifically excludes the decision to administer ECT, sterilization, or experimental treatments. “When in doubt, the guardian asks for a hearing.”

“I consider his [guardian] an answer to prayer,” says his mother. Nevertheless, Marilyn is working on the human rights alert. “I’m a nurse, retired, and I’ve never heard of anyone getting [ECT] this often… He doesn’t have a lot of say in his care and that’s hard for someone who’s very bright.”

Indeed, weekly sessions of electroshock are unusual, even by the standards of the APA, whose index of approved therapies describes ECT as “six to twelve treatments… usually given three times a week for a month or less.”

Jonstaard doesn’t know why a doctor would prescribe it more often than the APA standard. “The guardian ad litem [a court-appointed attorney who acts on behalf of children and incapacitated adults] would rely on the physician’s orders. It’s handled on a case-by-case basis by the physician.”

“It sounds excessive to me, from what I know,” says Marilyn, “but I haven’t researched it… I want to hear a reputable psychiatrist say that giving shock week after week is a reputable therapy. It wasn’t when I was a nurse.”

Marilyn would likely have no trouble finding such a psychiatrist, but she probably wouldn’t have much trouble finding one who comes down against ECT either.

The procedure has remained the most controversial practice in contemporary mental health, spawning a 1985 “consensus conference” between the National Institutes of Health and Mental Health. In 2004, the World Health Organization issued a position paper obliquely condemning the administration of involuntary ECT.

“The legal standard,” says Jonstaard, “[for administering a medical treatment the client does not want] is clear and convincing evidence that the benefits outweigh the risks and that it is the treatment of last resort.”

MindFreedom’s formal position likens ECT to other anachronistic practices, such as lobotomies or forced sterilization, and does not believe it should be medically licensed at all. “Shock treatment should not be given because it is inherently brain-damaging, intrusive, and potentially irreversible,” says Oaks.

MindFreedom’s positions are adopted by a board of directors, which includes one psychologist, but is primarily composed of people who have experienced involuntary mental health treatments, including ECT. The board is advised by a committee of psychiatrists, neuroanatomists, and physicians.

But somewhere between the APA’s position that ECT is less stressful than a trip to the dentist, and MindFreedom’s position that it is a form of legalized medical torture, lies the murky reality of Samuel’s life.

Marilyn says Samuel, now 54 years old, moved out when he was 17 and “has been up and down since then… I thought my husband couldn’t accept the freedom a child must get as they grow up.”

Then she was told her son was bipolar. “They said it was genetic,” Marilyn recalls. “They said if you can’t find the manic-depressive in your family, look for the drunk because they’re self-medicating… One doctor told me he had a personality flaw too, but I don’t know if that’s true.”

During manic episodes, Samuel has cut his wrists, punched out a plate glass window, wrecked cars, lost his clothing, and sent flowers to everyone he knows. He had his nose broken once in a fight and his mother doesn’t believe he’s received adequate care when in jail.

“I’ve cleaned up his apartment at least 11 times,” she says, once finding it littered with almond shells. Samuel’s hospitalizations usually last six months because “he’s hard to place… It would be really nice if he could maintain a home.”

Once Samuel put a bottle of syrup in the microwave. It began to smoke and set off the fire alarm. As a result, he was labeled a fire-starter, which made it all the more difficult to find placements for him, even though he really doesn’t start fires, his mother says.

“His behavior was a danger to himself. Whether it is now, I don’t know. As far as I’m concerned, the mental health law is terrible.”

Samuel’s medications weren’t working and ECT was tried five months ago in the hospital “as a last resort.” It seemed to work, which scored Samuel his current group home placement, despite his reputation.

Marilyn doesn’t know whether to think his current plea for help might be the harbinger of another manic episode or whether “it might be the case that the ECT is being abused.” Or if another manic episode merely proves that this new, forced treatment isn’t working either. “If he’s getting this way on electroshock therapy… but nothing else had worked, none of the medications.”

Marilyn says she’s received several phone calls with regards to the human rights alert, but couldn’t recall talking to MindFreedom –- who is no less convinced they have Samuel’s best interests at heart.

“If we’re arguing that he is somehow dangerous, then we should be asking why he is in the community,” says Oaks, referring to a requirement of the Minnesota state judiciary that decisions made on behalf of those deemed incapacitated must consider the “least restrictive alternative.”

Oaks says that, while MindFreedom doesn’t claim to have all the answers, they do underscore that the medical model currently dominating mental health remains unproven -– a relatively common criticism of psychiatry, broadly labeled “anti-psychiatry.”

But Oaks rejects the label. “A lot of our members use psychiatrists. A lot of our members are psychiatrists. Some members use psychiatric drugs… We’re pro-choice, pro-freedom.”

Oaks wishes to draw attention to what he calls “sane-ism.” “When we see someone as different, we have this hostility towards them… We label them as not-normal so we can perceive ourselves as normal” – a contrast he believes is intrinsically reductionist and drives the “chemical imbalance theories” of the medical model.

Some MindFreedom members define their problems as mental illnesses; others as biological, spiritual, existential, or the result of trauma. Many identify as having experienced “mental health abuse” and all “want to show how disempowering the system is. We should hear from people who have been there… What matters is [Samuel’s] perception, which is that he is being tortured.”

But in the middle of all these laws and theories and court orders and people who believe they speak for him, there’s a real person and a mother who loves her son, but doesn’t know what to do to help him.

“I’m 80,” says Marilyn. “I’m worried about who will take care of him when I’m gone… I’ve been through a lot of pain, a lot of nights praying. But [Samuel]’s pain is a lot worse… When do you stop being a parent? You don’t.”

– end –

[Note from MindFreedom International about above article: Ray freely and enthusiastically gave MindFreedom permissionto issue an alert and use his full name — Ray Sandford. He even willingly posed for a MindFreedom volunteer for a photo for theMindFreedom web site, and is aware it is on the MindFreedom home page, https://mindfreedom.org. However, Ray said he is more concerned about mainstreammedia, and therefore asked the below reporter to use a pseudonym.Ray is concerned the system will take away the little money he receives, or evict him. MindFreedom also has a signed release of information form from Ray.Unfortunately, his conservators tried to prevent MFI from issuing thehuman rights alert that Ray requested. MFI released that alert anyway.]