From one of my most beloved organizations, MindFreedom, comes an effort to challenge notions of normalcy as the American Psychiatric Association meets to unveil the DSM-5. From MindFreedom.org:
Free thinkers unite in an international campaign to question how psychiatric corporations try to control us and our democracy through their misguided idea of “normal.”
Be part of peaceful protest of the American Psychiatric Association, everywhere, especially Philadelphia, on 5 May 2012.
Occupy the American Psychiatric Association!
MFI calls on mental health consumers, psychiatric survivors and allies to Boycott Normal in response to the American Psychiatric Association’s preparation for a fifth edition of Diagnostic and Statistical Manual of Mental Disorders.
DSM-5 would be the latest edition of what is widely known as psychiatry’s “label bible,” used to determine if people can be diagnosed with mental ‘disorders’ or ‘illness.’
Today, we challenge normality and celebrate creativity and diversity. Please join us!
Want to get involved? If you’re in Philly, email Susan Rogers at firstname.lastname@example.org. She’s the nicest person on earth, so you won’t be sorry. Also, click HERE.
UPDATE: I go into this a bit further over at the Philly Post. Check it out, and thanks for your comments.
In today’s Daily Beast, Gail Sheehy writes about the exhaustive interviews she did with Newt Gingrich and his family members some years ago in preparation for a Vanity Fair article. Newt’s mother was living in Dauphin, Pa., at the time, and confessed to Sheehy that her son had a rough childhood—one she called “a heck of a mess.”
Newt’s was a rootless boyhood as his stepfather’s military career moved the family around the U.S. and abroad. His mother became more and more emotionally fragile. How did she survive? I asked Kit Gingrich.
“I almost didn’t,” she blurted out. “I had manic-depressive illness.”
“Oh, sure. My life was moving from one post to another and another doctor and more medicine,” she told me. “You name it,” she said, referring to all the medications she was given for bipolar disorder, “and I was on it.” When a new doctor took her off all medication, she said, “I almost fell apart.” Bob Gingrich was furious and demanded that she be medicated again. But in that brief window of clarity, she told me, she saw him with new eyes. “Bob is a tyrant,” she declared. “No question about it.”
Oddly, though Sheehy questions the impact that Bob (and Newt’s biological father) had on the politician, she goes on to say:
His mother’s legacy of manic-depression may be even more relevant. The condition is inherited in about 80 percent of cases. I asked Gingrich if he thought he had a genetic predisposition to bipolar disorder. He didn’t blink. He said he didn’t know, then applauded the special powers of leaders who are thought to have been bipolar.
“Churchill had what he called his ‘black dog,’” he said. “Lincoln had long periods of depression. You go down the list …” He speculated that leaders who are able to think on several levels at once may have a different biochemical makeup. “You have to have a genetic toughness just to take the beating,” he concluded.
Bizarrely, Sheehy spends the rest of the article essentially arguing that Newt may, in fact, have bipolar disorder. It’s pretty ridiculous and borderline offensive. She even quotes Frederick Goodwin, who should be ashamed of himself for stooping this low, as saying, “Gingrich’s quickness, his ability to pick things up quickly, is consistent with studies of first-degree relatives of manic-depressives.”
It’s veiled character assassination. I dislike Newt Gingrich very much, but political careers have been torpedoed by accusations of mental illness. Is that Sheehy’s agenda? I wonder if she’d treat a liberal politician the same way.
So the dear leader—frequently called Kim Jong Mentally-Ill—is dead. This hasn’t exactly occasioned an outpouring of grief, but it is an appropriate time to consider Kim Jong-il’s psychology, which, according to the limited reports received over the years by Western media, seems very distorted. Is this type of distortion—a personality disorder, perhaps—true of all dictators? There’s certainly a level of grandiosity that far exceeds that of the normal person.
Scientific American published an article yesterday: “The Psychology of Dictatorship: Kim Jong-Il” by Jason G. Goldman. Goldman starts where we all might—with Hitler, citing a 2007 study in which five experts were asked to analyze Hitler according to DSM diagnosis. The group did the same with Saddam Hussein, and in 2009, with Kim Jong-il. All three studies revealed six personality disorders that may affect dictators: sadistic, antisocial, paranoid, narcissistic, schizoid, and schizotypal.
Goldman does an admirable job of putting this information into perspective—pointing out, for instance, that most people who have such personality disorders do not, in fact, become dictators.
Also on Scientific American’s website, there’s a blog entry by Gary Stix, who writes: “What was up with a world leader who thought he could control the weather while engaging in his passion for Elizabeth Taylor movies?” He cites the same studies that Goldman does, but quotes the researchers on the political implications of dealing with such a leader:
“Kim Jong-il’s antisocial features, such as his fearlessness in the face of sanctions and punishment, serve to make negotiations extraordinarily difficult. Even ‘submitting to negotiations’ makes many antisocial individuals unwilling and hostile. Kim Jong-il appears to pride himself on North Korea’s independence, despite the extreme hardships it appears to place on the North Korean people. This behavior appears to emanate, in large part, from his antisocial personality pattern.”
President George W. Bush established the President’s New Freedom Commission on Mental Health in April 2002. Committees and subcommittees were created, and a vision statement was finally arrived at (I marvel at the amount of coffee and donuts that were probably consumed along the way). The vision statement read:
We envision a future when everyone with a mental illness will recover, a future when mental illnesses can be prevented or cured, a future when mental illnesses are detected early, and a future when everyone with a mental illness at any stage of life has access to effective treatment and supports – essentials for living, working, learning, and participating fully in the community.
The report’s conclusions were depressing:
In its Interim Report to the President, the Commission declared, “… the mental health delivery system is fragmented and in disarray … lead[ing] to unnecessary and costly disability, homelessness, school failure and incarceration.” …
The Interim Report concluded that the system is not oriented to the single most important goal of the people it serves – the hope of recovery. State-of-the-art treatments, based on decades of research, are not being transferred from research to community settings. In many communities, access to quality care is poor, resulting in wasted resources and lost opportunities for recovery. More individuals could recover from even the most serious mental illnesses if they had access in their communities to treatment and supports that are tailored to their needs.
The Commission created goals:
Goals: In a transformed Mental Health System …
Americans Understand that Mental Health Is Essential to Overall Health.
Mental Health Care Is Consumer and Family Driven.
Disparities in Mental Health Services Are Eliminated.
Early Mental Health Screening, Assessment, and Referral to Services Are Common Practice.
Excellent Mental Health Care Is Delivered and Research Is Accelerated.
Technology Is Used to Access Mental Health Care and Information.
Each of those goals was fleshed out with incredible detail and analysis. The Final Report of the Commission should be required reading for everyone interested in this topic. And it gave so many of us hope.
The integrated strategy outlined in this Final Report can achieve the transformation that will allow adults with serious mental illness and children with serious emotional disturbances to live, work, learn, and participate fully in their communities. Indeed, as has long been the case in America, local innovations under the mantle of national leadership can lead the way for successful transformation throughout the country.
In response to the Commission’s recommendations, the Substance Abuse and Mental Health Services Administration (SAMHSA) was tasked with distributing $92 million in Mental Health Transformation-State Incentive Grant (MHT SIG):
The MHT SIG program is a 5-year Federal grant program designed to help States transform their mental health programs into ones that are more effective and that better promote recovery and resiliency. The MHT SIG program requires all State agencies that may serve any individuals with a mental health problem to form a planning group and tasked that planning group with developing a Comprehensive Mental Health Plan, outlining how to better serve this population across the State agencies.
A reader, who I won’t name, got SAMHSA’s evaluation report. It’s not good news. He says:
The report was a bear to obtain. SAMHSA’s FOIA officer ignored numerous requests; however, that the report included the following makes this understandable:
“Were the grants able to create more recovery-enhancing environments? POC [Proof of Concept] studies were designed to focus on areas in which grantees thought they could effect changes. Limitations of this study were that the intervention fidelity and “dose” were not measured and therefore not statistically controlled. The results from these studies indicated the answer to this question is no.” Executive Summary, page 5, para. 2. [Emphasis is mine.]
I’m of the opinion that the entire $92 million MHT-SIG created no more then the Potemkin Village of transformation and SAMHSA feels it is best forgotten. I base this on the Proof of Concept studies, that “No formal definition of transformation was ever developed …” and SAMHSA was quick to take down its Transformation Tracker Explorer database which listed activities which could hardly be considered transformational, ex. largely trainings, colloquia, work groups, task forces, policy changes.
The tragedy is that my peers and I are now increasingly perceived as failing a transformed mental health system which now affords us every opportunity and resource to achieve not only recovery but wellness too. It is a burden we don’t deserve and it belies our reality. The truth would serve all of us better.
To read the full report, click here.
An incredibly eloquent submission by Joe Gutstein.
Let’s imagine for a moment that you are long into the public mental health system. You have been in the hospital multiple times, in a couple of partial hospitalization programs, and have spent years in sheltered workshops and day programs. You’ve received the Prophecy of Doom, “Too sick for too long to get any better.” You’ve heard plenty of statements beginning with “You can’t, You won’t, and You will never.” You’ve been told endlessly that something is intrinsically (genetically) wrong with you and the only thing that will truly save you is a medication yet to be discovered. You’ve also been told that the most important thing you can do is get on SSI or SSDI in light of the prolonged and persistent nature of your illness. You’ve been told to engage in meaningful activities generally limited to walking, listening to music, and reading. You’ve been told countless times to avoid any stressors which might be associated with more rewarding activities and these stressors will doubtless lead to yet another hospitalization. You’ve been told so many things.
You’ve lived through several successive Eras: Psychosocial Rehabilitation, Evidence Based Practices, Transformation, Recovery and now Recovery and Wellness but the only thing that actually changed was your medication. You’ve been referred to as a patient, a recipient, a client, a consumer, a prosumer, a self advocate and now a “person with ….” but everything is the same at the hospitals, the sheltered workshops, the partial hospitalization programs and the very day program you now attend. You are now told pursuant to the Recovery model that you are suddenly empowered but what evidences your empowerment? What is it in your life that is now different? When did you last hold a meaningful job, live in decent housing, go on a date, attend to a party which wasn’t held at 3 pm or have friends over to your place? Has your health improved? Has your circle of friends and acquaintances changed? Has your income increased to provide for more options? What activities do you now engage in which you wouldn’t have before you were empowered?
Are you empowered? Not really, nothing has changed in your existence. What you do have is a familiar long standing delusion in which you are empowered. You imagine, it is part of your symptomatology, that you can provide anyone anything and everything with a CGI script. This is an empowering belief within your disempowering reality and among all the other folks at the day program it gives you a unique identity, a unique story where being unique in other areas might not be highly regarded. Fortunately, there is no impact on your role as a person in the day program unless you chatter away about it. (No more so than your peer who believes he is being watched by friends on another planet. After all, he is no longer alone all the time. Someone is watching over him where no one else might otherwise care about him.)
What is going to replace this powerful delusion and that which accrues to you by virtue of it? Let’s consider your options and the system of supports and services which will assist you in replacing it. Knowing that it is best not to ask for anything specific which might fall beyond the groups found at the day program, You say, “I want to be empowered.” The reply is “Of course, we can help you with this. Did you know that the day program has an Empowerment Group?” (You knew there was an Empowerment Group.) Consequently, you are signed up for the day program’s Empowerment Group. It meets in the same room as the Socialization Group which was going to help you get a date on Saturday night and the Pre-Vocational Group which was going to help you get a meaningful job. But you know the folks in the Empowerment Group. Not a one has become empowered. (The group meets weekly and all the chairs are in a therapeutic arrangement. There are handouts and members of the group so inclined read aloud from the handouts.)
So in the final analysis, you have the delusion and the Empowerment Group. The delusion is empowering but the Empowerment Group isn’t. Sadly, no one asked you the right question in the Era of Wellness & Recovery. Now – for the first time – the very question he or she would want to be asked in the same circumstances is being asked, “What do you need to thrive?” What is it that would lead you to hope for a life where the delusion has no value and might be patently detrimental. And for once you truly know that your answer shouldn’t be limited to something that happens in another group but involves real skills, fostered and facilitated in the real world with services and supports which promote a life. And just maybe you’ll now believe in the possibility of that date on Saturday night and a meaningful job for this new reality is more satisfying and empowering then any long held delusion.
Thanks to advocate Fran Hazam for forwarding Dr. Lloyd I. Sederer’s article “Can You Trust Your Psychiatrist” from HuffPost. Citing influence from Big Pharma — and basically explaining the way the influence filters down to you — Sederer breaks down what you need to do to ensure the best care:
First, be an informed consumer. Just like with a car or washing machine you can learn about medications and other treatments for mental health problems. Turn to websites like your state mental health agency or the National Institute for Mental Health, the National Mental Health Association and the National Alliance for Mental Illness. Google key words about what you want to know, as you would for breast or prostate cancer, diabetes, and heart disease. Ask others who have successfully navigated the mental health care system and taken medications. As has been said, caveat emptor — let the buyer beware — and be prepared.
Second, ask questions of your doctor and other health professionals. Rather than being a marketing arm of the pharmaceutical companies, be a prudent buyer. Don’t be shy — you are your best advocate. When you visit your doctor ask two questions: why are you suggesting this treatment for me and what alternatives do I have? When in doubt get a second opinion: any doctor who does not welcome a second opinion is not worth keeping.
Finally, recognize that medications for mental disorders often help but generally are not sufficient. Great reliance on medications has fostered inattention to individual and family therapy and skill building programs.
Emphases mine. For the rest of the article, click here.
After a long battle with cancer, PW staff writer, Guardian columnist, punk-rock novelist, NME gadfly, gender-twisting rebel comedian and poet Steven Wells has gone on to other things. Well, not really. According to Steven, there’s no such thing as the afterlife, and if there is, I guarantee he’s really, really pissed off right now. I can just picture him at St. Peter’s Gates, saying, “Fuck me! This shit actually exists?”
We’ll all miss Steven so much, and I’ll say more about that later. For now, I’m wishing the best to all family and friends who are hurting. That’s what Steven really cared about in the end, though he was very passionately annoyed by knitting, as well.
Steven was often told he was anti-American. I loved his passion, and he cracked us the fuck up every day. This video was part of a series he did for PW called Steven Wells’ America, in which he took sacred cows and basically grilled them for dinner. Below, he reflects on the religiosity of an America that voted for Bush a second time (Steven was a staunch atheist). Toward the end he smiles a bit, so you know that he knows he’s being ridiculous. And that’s part of what was so cute about Steven — he’d rant, but then laugh at himself.
liz | 10:41 AM | BIG PHARMA, Funny or Offensive?, GLBT, Song of the Day, alternative treatments, anxiety, celebrities, children, cute fix, depression, hospitals / hospitalization, media, meds, military, philadelphia, phobias, politics, random, religion, suicide, violence
liz | 3:42 PM | politics
The headline at NJPoliticker.com reads: “CODEY BILLS WOULD TRANSFORM PATIENT CARE AT STATE PSYCHIATRIC HOSPITALS”
A package of bills sponsored by Senate President Richard J. Codey that are designed to protect patient safety and improve employee training and oversight at state psychiatric hospitals was approved yesterday by the Senate Health, Human Services and Senior Citizens Committee. … Sen. Codey worked closely with the Public Advocate’s office in drafting these bills, in part, to address a number of injuries and deaths that had arisen recently at state facilities such as Ancora Psychiatric Hospital.
Bill S2492, would require the Department of Human Services (DHS) to establish a training program for staff members who work directly with patients at state psychiatric hospitals in order to ensure the delivery of safe, secure, and therapeutic care. Utilizing best practices in patient treatment, the curriculum would include topics such as state and federal reporting requirements, patient safety, disease prevention, health wellness activities, anger management, skilled decision-making and how to deal effectively with life-threatening emergencies. … The bill would require DHS to establish an on-site educational assessment and remedial instruction program at each state psychiatric hospital in order to evaluate the proficiency of all staff members who work directly with patients.
The bill would also require the commissioner of DHS to establish minimum educational standards for staff members at a hospital who work or will work directly with patients. … Employees already working directly with patients at the time of the bill’s enactment would be required to undergo an evaluation to determine if they meet the educational standards or require remedial instruction through the on-site education program.Any employee that refuses to participate in the training program or fails to meet the educational standards and refuses to participate in remedial instruction, would be terminated from employment at the hospital. …
The second bill, S2493, would require current and future employees of state psychiatric hospitals, developmental centers and veterans’ memorial homes to undergo drug testing for controlled dangerous substances as a condition of employment.
The last bill in the package, S2494, would require DHS to report the number of physical assaults and deaths that occur at state psychiatric hospitals. The report would be a public record, posted on the official DHS website, and updated quarterly, but would not contain any identifying information about patients or staff members.
As a longtime fan of Sen. Codey’s commitment to mental health matters, I do think it’s a good move. But is it transformative? As an astute TTWS reader notes:
It’s hard to see how these three bills alone will transform patient care at New Jersey’s state psychiatric hospitals which includes Ancora, let alone insure the care long required by law, New Jersey Statutes Annotated 30:4-27.1(c), It is the policy of this State that persons in the public mental health system receive inpatient treatment and rehabilitation services in accordance with the highest professional standards and which will enable those hospitalized persons to return to their community as soon as it is clinically appropriate.
Too often words and deeds fail to intersect at our nation’s psychiatric hospitals. Transform and its variants are now used so frequently that any change is considered transformative. More recently at another New Jersey state psychiatric hospital where a new building was going to lead to transformation (click here, paragraph 5), the reality belied the representations, ex. Developing therapeutic alliances between patients and staff remains a challenge, with differences in race, ethnicity, social class and education creating a ‘them versus us’ scenario.
“When I use a word it means just what I choose it to mean — neither more nor less.” Humpty Dumpty
Activist extraordinaire Fran Hazam has sent much info on the challenges to voters with disabilities. If you need any of the forms mentioned herein, let me know by emailing me: email@example.com, and I’ll get them out to you.
One thing to keep in mind, Fran says: “a voter in the hospital will need assistance from a friend to complete an Emergency Absentee Ballot. The process can be complicated to use for someone who is ill, since the completed ballot has to be hand delivered to the County Election Board….not to your local polling place.”
She also says, “In Philadelphia Remember to Vote the 2 Questions First…..so easy to forget them after choosing candidates. But important YOU be heard on these changes to the City Charter !” This is especially good advice to us with cognitive difficulties.
The below is from Paul O’Hanlon, Esq., of the Disability Rights Network:
Election Day Survival Kit for Voters with Disabilities
Pennsylvania registered a record numbers of new voters last year. If the poll worker cannot find your name on the list of registered voters, ask them to look at the list of “inactive voters.” Voters who have not voted for a few elections, or who did not receive or respond to official election mailings have been placed on a list of “inactive voters.” The act of voting will be sufficient to transfer your name from the ”inactive” to the “active” list. If your name cannot be found on either list, and if you are sure you are at the correct polling place – ask for a provisional ballot. Federal law requires that you be provided with a provisional ballot in such a case. Do not leave the polls without casting a vote!
How do I verify that I am registered to vote?
How do I locate my correct polling place?
Will I be required to show I.D. to vote?
All first-time voters, and all voters who are voting for the first time in a precinct, can be required to show an acceptable form of I.D. You can find a list of acceptable forms of I.D. here.
If you do not have I.D. when you go to vote, and if returning later with proper I.D. is not an option, you have a right to vote by a Provisional Ballot. Provisional Ballots receive greater scrutiny than other ballots. However, if you are registered to vote, and if your signature matches the signature on your voter’s signature card, then your Provisional Ballot should get counted. If necessary, casting a Provisional Ballot is much better than not voting at all.
Can I get assistance in the voting booth if I need it?
Voters with disabilities have the right to have the person of their choice provide assistance in the voting booth. The person providing assistance can be almost anyone — a friend, a family member, or even a poll worker. However, the assistant cannot be: (1) the voter’s employer; (2) the voter’s union representative; or (3) the Judge of Elections.
When a voter with a disability requests assistance in the voting booth, the poll worker should look up your registration card to see if it has a notation indicating that you require assistance. If there is no notation on the card, you will be required to complete a written statement explaining the nature of your disability. Some voters may be offended at intrusive questions like asking for the name, phone # and address of their doctor. But the poll workers are required to enter all this information, along with the name of the individual who provided assistance, into the “Record of Assisted Voters.” The voting process is a very formal process with many safeguards.
What if I find my polling place is not accessible on Election Day? How can I vote?
Voters with disabilities, as well as seniors 65 and older — who are assigned to inaccessible polling places — are eligible to cast an Alternative Ballot. It is called an “Alternative” ballot because it is a method of voting provided to the voter as an alternative to having an accessible location. (Some deal!)
An Alternative Ballot looks exactly like an Absentee Ballot, but a different colored envelope is used to distinguish it from an Absentee Ballot. The normal deadline to file an application for an Alternative Ballot is the Tuesday before Election Day. However, if you did not know that your polling place is inaccessible, or if you had some good cause for not being able to file by that deadline – you can still vote! The Pennsylvania Department of State created procedures for an Emergency Application for an Alternative Ballot, which may be filed as late as Election Day at 8:00 p.m. A voter with a disability who discovers on Election Day that their polling place is not accessible can file an Emergency Application for an Alternative Ballot. This Emergency Application must be filed on Election Day, before 8:00 p.m., at your County Elections Office.
What if you can’t get to your County Elections Office on Election Day?
If you are unable to travel to the County Elections Office on Election Day, you can get a friend or relative to act as your agent to travel back and forth to the County Elections Office.
You will need to prepare three forms: (1) the Emergency Application for Alternative Ballot; (2) the Designated Agent Form; and (3) the Certification of Designated Agent Form.
What if my right to vote is challenged on Election Day? What if someone says I’m not competent to vote?
In Pennsylvania, we have only 3 qualifications for a person to register and to vote. The individual must be:
• A citizen of the United States for at least one month before the election;
• A resident of Pennsylvania and the election district for at least 30 days before the election;
• At least 18 years of age on or before the day of the election.
Pennsylvania does not have any laws that restrict the right to vote of people who happen to have developmental, mental health, or physical disabilities. In rare instances, Courts issue orders depriving people of the right to vote. But, so far , “electors” in Pennsylvania cannot be challenged on competence, ability or worthiness to vote.
Persons convicted of felonies (or any other crime) are eligible to vote – only individuals currently incarcerated in penal institutions for felony convictions are denied the right to vote.
Who can I call on Election Day if I’m prevented from exercising my right to vote?
Call the Election Protection hotline at 1-866-OURVOTE (1-866-687-8683)
Voters who speak Spanish can call 1-888-VE-Y-VOTA (1-888-839-8682)
Disability Rights Network of Pennsylvania
Voting is your right. Don’t leave the polls without voting!
Your vote matters — but only if you use it!