Consciousness and the Culture Wars

It's never pretty to see journalism transformed into propaganda, especially when you're the one who wrote the journalism. I recently did an article for the New York Times Magazine about the grey zone between coma and consciousness. The National Right to Life web site then posted a long "News & Views" piece by one Dave Andrusko that pretended to recount my article. It was annoying enough to see careless mistakes--adding quotation marks to a passage from the article, so as to put it into the mouth of a doctor, for example. But it was really unpleasant to see my article distorted to serve a political purpose.

Here's some background. The National Right to Life Coalition is opposed to witholding care from people with chronic, severely impaired consciousness. Karen Ann Quinlan's parents went to court for the right to take her off a ventilator in 1976; since then, families have won the right to have feeding tubes withdrawn from patients. Currently there's a case in Florida over a woman named Terri Schindler-Schiavo, whose husband wants her care terminated.

My article was primarily about scientists who are doing basic research on the biology of consciousness, trying to figure out what's going on in the brains of people who cannot tell them anything about their own inner life. In some cases, people with seriously impaired consciousness--who cannot talk, who can barely follow a command to blink an eye--turn out to respond to language and other stimuli with brain patterns that are surprisingly like those of conscious people. It might even be possible some day to give them drugs or electrodes to help them become a little more conscious.

In retelling this story, Andrukso of the National Right To Life Coalition snipped up the story and turned it into a collage to suit their agenda. And in the process, he spread some serious misinformation that could confuse families and cause them unnecessary grief.

In the Times article, I describe the spectrum of states that exist below the level of full consciousness. If you get in a car crash, you may come into a hospital in a coma. In other words, your eyes are closed and you have no signs of consciousness at all. If you survive for a few weeks, you may come out of the coma but still not be conscious. Your eyes open and close in a wake-sleep cycle, you may move your eyes, you may squeeze someone's hand. But that's about it. This is known as a vegetative state. (VS) You may stay in this state for the rest of your life--in a chronic vegetative state, in other words. Or you may begin to show more signs of consciousness. If you show signs of consciousness that are unreliable--touching your nose once on command and then not touching it in later examinations, for example--then you may be diagnosed as being in a minimally conscious state (MCS). From MCS, you may gradually show more reliable signs of consciousness until you recover fully, or you may stop at MCS for the rest of your life.

The doctors I portray have done two different studies. One they did on chronically vegetative patients, some of whom showed strange behaviors--like shouting a curse word every couple days in one case. In those studies they found that isolated parts of the cortex are still active in some patients, like fragments of mind. The more recent study (still ongoing, actually) is on MCS patients. In response to the sound of a familiar voice or a scratch on the arm, the brains of these patients become active in much the same way conscious brains do. And yet, between these responses, their brains use less energy than someone under full anesthesia. It suggests a real biological difference between chronic VS and MCS, and hints at some ways to bring more awareness to people with MCS (a few hundred thousand Americans are in MCS, by the way).

Here's what you get in the National Right to Life piece: MCS supposedly "identifies people who are in a condition somewhere between a pvs [persistent vegetative state] and a coma."

That's like saying 3 is somewhere between 1 and 2.

By mixing up the differences between MCS and VS, Andrusko performs a sleight of hand with the results of the scanning work, making it seem as if vegetative patients actually have these remarkable reserves of mental activity. And then comes the political twist: "With the Zimmer article," he, "we can hope that the rag-tag army of family, friends, and volunteers who have stood by Terri Schindler-Schiavo has been provided with some reinforcements." And he then adds, "How ironic that it should come from the New York Times!"

I see another irony in all this. It is absolutely untrue that people accurately diagnosed in chronic vegetative states--who have not shown signs of consciousness for years--have shown any evidence of consciousness in brain scans. Only those in MCS do. The distinction is crucial--particularly because in the past some people with MCS may have been misdiagosed as being in a vegetative state.

I'm not writing this to attack the National Right to Life Coalition for their political positions. Frankly, in the narrow confines of a blog, I don't even want to get into the vastly complicated issue of withdrawing care from these patients. (Except to point out that so far, the courts have refused to come down in favor of withdrawing care from MCS patients when their wishes were not clearly stated before they lost consciousness.) But shuffling facts to suit your political needs--particularly when it concerns the most agonizing experience a family could ever go through--is pretty awful.

I'm reminded of Mark Twain's reaction to seeing a ridiculous translation of one of his stories into French. "I think it is the worst I ever saw," he wrote, "and yet the French are called a polished nation. If I had a boy that put sentences together as they do, I would polish him to some purpose."


More like this

Please sign and if you have others who would care to sign please forward to

What we are asking for here is a geometrical progression.

Send to 10 or more caring people in your circle of friends who will
do the same and so on.

Carefully read the Florida Bar petition online before signing, requesting
the Florida Bar bring described formal action involving attorneys George
Felos and Deborah Bushnell, for reasons described in the petition.

FLORIDIANS AND NON-FLORIDIANS accepted. This is going straight to the
Florida Bar. Count is around 131 at this time. Please send this to as many
caring individuals as you can with the message to others to take the same


You can view the police report, concluded May 14, 2004 here: By clicking the thumbnails, you can view a full-size
scan of each page. Additionally, you can download the entire package for
offline viewing (requires Winzip) here:

The above report not only indicates that absolutely nothing suspicious was
found as the result of this exhaustive investigation, but also that the
'marks' and 'needle cap' (which turned out to part of an irrigation kit)
were found PRIOR to Terri's parents visiting that day.

Additionally, I encourage you to read the press release issued by Mr. Felos
the night of the alleged incident here: in which he states that a
forensic team was investigating the matter. In speaking personally with the
Clearwater Police Department, I have learned that they don't even have a
forensic team.

Be creative, do take action.

"Petition for State protective custody for Terri" (please get the petition
information out to as many peoples as possible)

"Saving Terri Schiavo"

Laws being broken:

Connect the Dots ... for Terri

By Juan Schoch (not verified) on 19 May 2004 #permalink

FL AHCA Cover-Up Forces Schoch to Issue Public Writ of Mandamus

A cover-up by the Florida AHCA (under Jeb Bush) in regards to the treatment and care of Theresa Schindler Schiavo, etc. forces Juan Schoch to issue a Public Writ of Mandamaus to various City, County, State and Federal officials.

Tallahassee, FL (PRWEB) September 2, 2004 -- The following public writ of mandamus was sent via Express Mail and certified letters to all parties in the letter on 8-28-04. It was also passed out to the media in Tallahassee the day before and on the day of the oral arguments before the Florida Supreme Court regarding the constitutionality of HB 35-E/S 12-E (Public Law 03-418). This is my Public Writ of Mandamus. Each letter came with a mini cd of the AHCA documentation and other information which proves there is a cover-up. (Note: If you would like to represent or know someone who would like to represent this case please call Juan Schoch at 407-925-4141):

August 28, 2004

James D. Boyd
Inspector General of AHCA
2727 Mahan Drive
Tallahassee, FL 32308-5403

Re: All information, CCR#s, and yet to be assigned CCR#s contained
and referred to in CIG#200406030002 and AHCA Tracking #05-003, etc.,
other cases yet to be generated and your duties to set Theresa
Schindler Schiavo on the road to her recovery (much can be found in
the enclosed mini compact disc)

Dear Mr. Boyd:

Thank you for your letter of August 13, 2004 regarding my August 9,
2004 e-mail requesting public records and copies of various agency
documents. In your response you write "the issues raised in your
June 3 letter and July 20 e-mail did not show evidence of possible
violations of statutes, policy or procedure that could constitute
misconduct or wrongdoing on the part of agency staff" to which I
make the following statement and request:

I demand as a United States citizen and a Florida resident
sufficient corrective actions, remedies, redress, relief, etc. to
what I perceive and know to be illegal actions of AHCA, facilities,
etc. I hereby request AHCA and any other government agency or
entity, local, county, state or federal invested with investigative,
enforcement and prosecutorial powers who may be reading this, or
others of whom it is within their purview of being able to contact
said powers, etc. to do their jobs of investigating, enforcing or
assisting in getting the laws enforced in regards to valid
allegations of acts of felony neglect and attempted murder, etc.
perpetrated against the person of Theresa Schindler Schiavo.

While it is my duty (when it has come to my knowledge) as a resident
of the State of Florida and a United States Citizen to report
abuses, neglect or exploitations against vulnerable people who can't
speak for themselves it is NOT my job to site book and page. One
would think that the competency level of all persons in agencies
serving the public who by statute are to receive, properly review
and survey complaints for violations of statutes, criminal
violations, disregard for policies and procedures that are in fact
evidence of misconduct or wrongdoing on the part of agency staff and
facilities, persons, etc. would be much higher then heretofore

I have provided, while perhaps to some seemingly disconnected or
incongruent, sufficient, overall and comprehensive evidence to
illuminate within the average persons mind and their reasonable
ability to piece together and comprehend pertinent data, more than
enough evidences of illegal conduct, which point to statute
violations on the part of agency staff and facilities, etc. and it
has become painfully clear that people in your and other agencies
are spending more time sending not just me, but most complainants,
relating to the matters presented, far afield from the matter at
hand, of which there is or are:

* Non-delivery of all 15 retained rights of this incapacitated
person pursuant to Florida Statute 744.3215(1)(a-o) both
individually and collectively as a whole

* State licensed facilities bowing to the abuse of power by the
guardian, his attorneys, local law enforcement, the state attorneys
office, and other public officials to facilitate and further the
denial and withholding of this citizens statutory and constitutional
retained rights

* Illegal acts and or omissions by many supervisory level personnel
in many agencies and facilities, in non-fulfillment of their duty by
those personnel pursuant to Florida Statute 415.1034 mandatory
reporting to invoke and call upon protections under the
whistleblowers act when their employment is threatened. Such and
other failures are enabling, promoting and facilitating what appears
to be an overall agenda of their various supervisors (and others)
who indirectly and/or directly are working collectively (knowingly
or unknowingly) pursuant to a directed agenda by the recently
exposed many in positions of public trust

In light of the fact that AHCA Complaint Administration Unit intake
operator Justina told me that they "didn't want to hear about what
particular statute violations were occurring as it is the AHCA's job
to know these things," and as I have stated above it is not my job
to point out the specific violations of statutes, policy, or
procedure that could constitute misconduct or wrongdoing on the part
of agency staff, facilities, etc. (your words in bold), it should be
obvious to you that while I am perfectly capable of seeing and
reporting specific violations I was being told not to do this by the
Complaint Administration Unit intake personnel. Now I am being told
by you to the contrary that I must do your jobs. This in and of
itself is evidence of an agency and a system that continues to
notoriously exhibit incompetence in this matter, and only proves a
limited ability to send the very people who you serve, on endless
tail-chases and endless non-productive rabbit trails.

While all of this energy is expended, the primary matter at hand,
the FS825.102 and FS825.103 abuse, neglect and exploitation of
Theresa Marie Schiavo continues at the liable hands of all agencies,
various personnel and public officials, etc. to the detriment of not
only her but all vulnerable adults, elderly and disabled persons
throughout the State of Florida by the acts and omissions of every

one of these negligent persons who are entrusted with the Public's

BE IT KNOWN, that everyone is officially on notice, that to continue
to obey these illegal and subversive directives, of persons who wish
to continue to further the obvious and blatant efforts to
intentionally cause the death of this very conscious, self-aware,
cognitive, disabled and vulnerable adult (who has been actively
prevented from getting better) as defined by Florida Statute 415,
744, 825, 400, 782, the ADA Act, and CFR42 rises to the level of
felony crimes and is unlawful, collectively, pursuant to Florida
Statute 876.22 through FS876.31 known as the Subversive Activities
Act, in that the collective efforts, whether knowingly or
unknowingly, of all the involved including medical professionals,
public servants, facilities, guardians, caregivers, and others, is
ultimately resulting in the destruction of all that we as free
citizens enjoy as our constitutional protections, which are there to
guarantee our inalienable right to life, liberty to that life, and
the pursuit of happiness through our FS744.3215 retained right to be
restored to capacity at the earliest possible time, which has no
time limit.

An Inalienable Right is particularly defined as: That which cannot
be given or taken away. Thusly, a person cannot Give their Life away
nor can it be Taken away. Both are crimes, and protections of life
are networked rather thoroughly throughout our Laws and our

Consider this my public Writ of Mandamus to all (with various media
as my witness) who will be receiving this letter, to cease and
desist your acts or omissions which are felony crime statute
violations, which may lead ultimately to this woman's death by your
incompetency, complacency, malfeasance, misfeasance, obedience to
personal or collective agendas, disobedience of mandatory reporting
of abuse, neglect and exploitations. This will require your
proactive efforts in conjunction with other agencies and persons, to
go against those who draw you in and only use you as pawns in a
bigger agenda, by this case, to create a constitutional Right To
Make You Dead. Investigate and prosecute the guilty parties. It is
your obligation to set Theresa on the road to her recovery.

Do your jobs or suffer the consequences in the long run for your
participation in blatant, in your face, felony crimes.

Juan Schoch / Lake Mary, FL

P.S. I was never issued new CCR#'s per my written complaints (June
3, 2004) and yet you have done nothing but obfuscate that fact. I
find this more than just a little reprehensible and believe it shows
the complete and total incompetence, if not outright obstruction of
justice, by you, your staff, the AHCA Complaint Administration Unit
and others in your agency. It would be smart to stop digging
yourself a hole and get back on the right track.

cc: Jeb Bush, Governor
c/o Christa Calamas, Governor's General Counsel,
Charlie Crist, Attorney General,
Lee Constantine, Senator, District 22,
Derry Harper, Chief Inspector General, Executive Office of Governor,
Dawn Case, Director of Investigations, Executive Office of Governor,
Guy M. Tunnell, Commissioner, Florida Department of Law Enforcement,
Lance Newman, Director, Tampa District Office, Florida Department of
Law Enforcement,
Cynthia Schuler, District Administrator of District 14, Department
of Children and Families,
Bernie McCabe, Pinellas Pasco State Attorney,
Dorene Thomas, Chief of Police, Pinellas Park Police Department,
Sid Klein, Chief of Police, Clearwater Police Department,
Everett Rice, Pinellas County Sheriff,
Carl Whitehead, Special Agent in Charge, FBI Tampa Division,
John L. Wodatch, Chief, Civil Rights Division, Disability Rights
Section, U.S. Department of Justice,

Representatives of House Committees Elder Affairs and Long Term
Care, Family Health, Health Care and Health Services: Rep. Hugh
Gibson / Rep. Dorothy Mindingall / Rep. Tom Anderson / Rep. Joyce
Cusack / Rep. Carole Green / Rep. Richard Machek / Rep. Sheri
McInvale / Rep. John Quinones / Rep. Dave Russell / Rep. Heather
Florentino / Rep. Sandy Adams / Rep. Aaron Bean / Rep. Faye Culp /
Rep. Nancy Detert / Rep. Matt Meadows / Rep. Sandra Murman / Rep.
Nan Rich / Rep. Frank Farkas / Rep. Ed Homan / Rep. Holly Benson /
Rep. Gus Bilirakis / Rep. Marty Bowen / Rep. Susan Bucher / Rep.
Larry Cretul / Rep. Rene Garcia / Rep. Gayle Harrell / Rep. Arthenia
Joyner / Rep. Stan Mayfield / Rep. Dave Murzin / Rep. Joe Negron /
Rep. Ralph Poppell / Rep. Manuel Prieguez / Rep. Julio Robaina /
Rep. Yolly Roberson / Rep. Ray Sansom / Rep. Eleanor Sobel / Rep.
Shelley Vana / Rep. Roger Wishner / Rep. Juan Zapata

Kate O'Beirne, Washington Editor, National Review / David Sommer,
Reporter, Tampa Tribune / Brendan Farrington, Correspondent,
Associated Press / Jim Witters, City Editor, Bradenton Herald / Mike
Vasilinda, Bureau Chief, Capitol News Service / John Lucas, Bureau
Chief, Florida News Network / Marshall Griffin, News Director,
Florida Public Radio / John Baker, Bureau Chief, Florida's Radio
Networks / Rick Flagg, Bureau Chief, Florida Radio News / Jim
Saunders, Bureau Chief, The Florida Times-Union / Paige St. John,
Bureau Chief, Gannett News Service / Marc Caputo, Reporter, The
Miami Herald / Lloyd Dunkelberger, Bureau Chief, New York Times
Florida Newspapers / John Kennedy, Bureau Chief, Orlando Sentinel /
Shirish Date, Bureau Chief, The Palm Beach Post / Lucy Morgan,
Bureau Chief, St. Petersburg Times / Linda Kleindienst, Bureau
Chief, Sun-Sentinel, South Florida / Nancy Cook Lauer, Bureau Chief,
Tallahassee Democrat / David Wasson, Bureau Chief, Tampa Tribune /
Georgia Davis, News Director, WFSU-TV/The Florida Channel / Jim
Lehrer, NewsHour w/, PBS / Diane Sawyer, ABC News / Dan Rather, CBS
News / Larry King, CNN/Atlanta / David Shaw, Media Critic, Los
Angeles Times / Richard S. Newcombe, Creators Syndicate / Reed
Irvine, Chairman, Emeritus, Accuracy in Media

# # #

By Juan Schoch (not verified) on 12 Sep 2004 #permalink