I’ve been thinking a lot about the recovery movement lately. Most of my contact with it comes through the Mad In America site. I recently got into an exchange of comments on the MIA site with a person who appears not to want to hear what I had to say because I was a mother, and therefore not a person who qualifies as having “lived experience.” The fact that mothers, too, have lived experience in the recovery movement is not respected in the recovery movement, I am sad to say. Many people in the movement have their own stories to tell about how their parents contributed to their problems. This particular commenter assumed because I am a mother writing about my son that I am an oppressor, an infantilizer, even a castrator, and kept pestering me to allow my son to speak for himself, which is rather a silly attack because there is nothing stopping my son from speaking for himself. He can create his own blog, get his own Twitter account and go for it. But I own my experience and I feel that mothers, too, have a place a the table, whether others in the recovery movement like it or not. Many in the more radical wing of the recovery movement do not want to hear from people who hold opinions that even occasionally differ from their own firmly entrenched view and the hit list includes parents, psychiatrists, people who accept their diagnosis, people who claim they can function on meds, people who believe that vitamins and diet cured them, people who think they have a brain disease, etc. Is the recovery movement big enough and sophisticated enough to learn from each other’s lived experience?

The Mother Bear Community sent me the following request which I am circulating. Please consider writing a letter to the appropriate persons (listed below) re the potential federal mental health policy changes that were discussed today in Washington.

Dear Rossa:

Fellow Mother Bear CAN advisor, Jim Gottstein, Esq., of President and CEO of the Law Project for Psychiatric Rights, has sent a letter to his State Senator stating his concerns about potential Federal mental health policy changes, including psychiatric (diagnoses) profiling, that may be discussed at Thursday’s Senate HELP Committee Hearing on Assessing the State of America’s Mental Health System. (HELP- U.S. Senate Committee on Health, Education, Labor and Pensions).

If you are in the U.S. and concerned about possible mental health policy decisions and would like to write a letter to your Congresspersons, State Senator(s) and/or the Chairman of the Committee, Tom Harkin, D-IA, you might find the links below helpful:

PscyhRights Letter and recommendations (to review concerns and/or customize your own letter)
http://psychrights.org/2013/130121Ltr2SenMurkowski.htm
Names and contact information for Senate HELP Committee members (right vertical column).
http://www.help.senate.gov/

A recent article from Slate Magazine discusses the inaccuracy and stigma surrounding the term “schizophrenic.” The part of the article that actually interests me is the quotation from the presidential commission report in 2003 (President’s New Freedom Commission on Mental Health) that linked violence in schizophrenia to substance abuse. Isn’t it more than high time that the current presidential initiative on gun violence begins to ask the important questions: Could ingestion of legally prescribed brain altering chemicals into your body also be considered a form of substance abuse? If not, why not? If the answers received indicate “yes,” then, in order to prevent the kinds of violence we have witnessed in Newtown, Aurora, etc., what further initiatives can be taken regarding the widespread use of psychiatric medication by the general public?

Slate: According to a 2003 report by a presidential commission on mental health, an alarming “61 percent of Americans think that people with schizophrenia are likely to be dangerous to others.” The report continues: “However, in reality, these individuals are rarely violent. If they are violent, the violence is usually tied to  substance abuse.”

http://www.slate.com/articles/health_and_science/science/2013/01/schizophrenia_definition_and_metaphor_schizophrenic_does_not_mean_multiple.single.html

Since it is highly unlikely that the current government will accept that logic that brain altering chemicals are brain altering chemicals, whether legally prescribed or obtained on a street corner or in the comfort of our own homes, then it is up to we the people, to say loud and clear, psychiatric medications are a form of substance abuse, especially when prescribed for too long, at too high doses, and in tandem with too many other medications.

Re-examining the Biochemical Model after Newtown: The Effects of Stigma and the Need for Better Family Coaching

by Rossa Forbes

January 7, 2013

The media discussions around the horrific event that unfolded in Newtown, Connecticut just before Christmas once again focus the world’s attention on the nation’s gun control laws. Let’s hope that this time, the right actions for the right reasons will be taken to prevent these kinds of atrocities from occurring. This latest gun tragedy is also a topic of much debate in the mental health communities.

Discussion of what particular DSM mental health label Adam Lanza had, as with previous mass murders, is a red herring. That being said, our culture, our school system, the way we treat our family members has more and more adapted itself to psychiatric classification and labeling. The drugs used to treat these labels are more or less the same, thereby undermining these distinctions. Those of us in the more militant wing of the recovery movement believe that people have emotional problems in adjusting to living no matter what category they are deemed to fall under in the DSM.
What I am about to say will not stop the kinds of tragedies we see in Newtown, but it may save some individuals like Adam Lanza from becoming mass murderers.   Read more here

I rather doubt my lengthy letter to the editor will appear in the New York Times on-line edition, so I decided to print it after the comments (see below) that did appear. I have since submitted to the NYT an abridged version of my original letter. The Steinberg op-ed appears here.

Letters

The Many Unknowns of Schizophrenia     Published: January 1, 2013

To the Editor:

As a clinical psychiatrist, I found Dr. Steinberg’s article troubling. It is a common problem in our field that psychiatrists speak of schizophrenia as if it were a well-understood condition, with a clear pathology and clear, effective treatment.

In fact, our understanding of this phenomenon is evolving and unsettled. What we call schizophrenia is probably a syndrome with many causes, and with a wide range of outcomes, with and without treatment. Many people do benefit from standard treatments, but many do not — and many find these treatments objectionable because of metabolic and other toxicities.

Moreover, many people find the current system of mental health delivery to be disrespectful, coercive and violent. It would be hard to imagine forced treatment for other medical conditions, like cancer or cardiovascular disease.

It has been my experience that when people are treated in a respectful way, offering options and choices rather than dictating treatment, better outcomes occur. Similarly, when we doctors are honest about the limitations of our knowledge, and humble about the power of our proffered treatments, there is more room for the person at the center of concern to find a path of care that can be helpful and effective.

For a tiny minority of patients, with substantial histories of violence, it is appropriate that the legal system, after an adversarial process, compel patients to accept treatment against their will.

I am worried that Dr. Steinberg’s article communicates more certainty about the nature and treatment of schizophrenia than is warranted, and makes too little room for patients and their families to make informed choices about care.

CHRISTOPHER GORDON

Framingham, Mass., Dec. 26, 2012

The writer is a psychiatrist and an associate clinical professor of psychiatry at Harvard Medical School.

To the Editor:

Paul Steinberg makes valuable points about the dismantling of sound psychiatric care for psychotic illness. He notes that in the name of civil liberty, severely disturbed people end up undertreated, at the expense of the “rights” of the community to be safe.

People suffering the harangues of command hallucinations and terrorizing paranoid delusions cannot demand civil liberty, failing any test of the capacity for informed consent (which requires an understanding of what refusing treatment means).
More important, it is in the interest of people with acute psychotic torments to get care, to protect them from doing horrific acts and, often, committing suicide. The right to treatment has been muddled by the misguided legal impositions.

In the past, egregious overuse of electroconvulsive therapy, toxic medication and long involuntary hospitalization motivated a reasonable patient rights movement. Times have changed. Treatment is more often withheld as insurers and risk managers shrink the obligations of decent care.
SARA HARTLEY

Oakland, Calif., Dec. 26, 2012
The writer is a psychiatrist.

To the Editor:
Paul Steinberg says, “It takes a village to stop a rampage.” Most of the millions of Americans with schizophrenia commit no violent or nonviolent crimes. As a nation, we have no monopoly on mental illness, nor do we have the worst mental health system in the world, or the most liberal protection of civil liberties. These are not the causes of our extreme firearms violence.

Dr. Steinberg is right that some practitioners are insufficiently interested in treating serious disorders. We do need mobile early intervention teams, collaboration among community mental health professionals and police, and less reliance on medications. Our people deserve better access to known best practices, true insurance parity and affordable, accessible services.
A nation can stop rampages, but it is doubtful that a more restrictive, coercive mental health system will help achieve that goal.

KENNETH J. GILL

Scotch Plains, N.J., Dec. 28, 2012

The writer is chairman of the department of psychiatric rehabilitation and counseling professions, University of Medicine and Dentistry of New Jersey.

To the Editor:

I am deeply offended on several levels by Paul Steinberg’s op-ed opinion, which he presents as facts. Dr. Steinberg has taken it upon himself to link schizophrenia to Adam Lanza. He seems to be the only person saying so from what I have read so far on both sides of the pond (I live in Europe). The media has variously reported autism spectrum, Aspergers, OCD, anxiety issues, but not once have I seen the word “schizophrenia.” There is nothing from what we know about Adam Lanza to date, that suggests schizophrenia to me.

But, Dr. Steinberg’s piece suggests something more troubling beyond the willingness of a psychiatrist to publically diagnose someone he has never met (which is highly unethical). He invokes his credentials as a psychiatrist to scapegoat psychiatry’s perennial bogey-man, schizophrenia. Remember, the media has not speculated on schizophrenia, and it is interesting that autism bloggers and activists seem to accept that Adam Lanza had something recognizable as a form of autism, but in unanimous agreement that autism did not pull the trigger.

Propagandists know that the “big lie” has a certain emotional credibility with the public that is missing from the small lie, and that the public will more readily fall under its spell.

What does substituting schizophrenia for autism accomplish, one may ask? Well, for a start, it immediately crystallizes in the mind of the public the recent mass murders when the word “schizophrenia” actually was reported as possible diagnosis. By going for the “big lie” in a period when the public is desperate to DO SOMETHING, Dr. Steinberg skillfully shifts the debate to forced treatment, something which is not on the agenda of the autism community. The autism lobby is big, relatively strong, and child-focused. The schizophrenia community is small, diverse, and not well organized or funded. Why take on autism (and children) when you can conveniently use schizophrenia to accomplish your policy goals?

There are countless people, well-informed bloggers, and even the letters writer here, who appear to have accepted Steinberg’s propaganda at face value. Perhaps this is because The New York Times gives Dr. Steinberg an authoritative platform by not allowing readers to comment directly on the piece? Why is that?

Yours sincerely,

—

Rossa Forbes

http://holisticschizophrenia.blogspot.com