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Human Rights Defenders

“All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood.”

 Universal Declaration of Human Rights

Article 1

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"No pessimist ever discovered the secret of the stars, or sailed to an uncharted land, or opened a new doorway for the human spirit."

- Helen Keller

"The first step in the evolution of ethics is a sense of solidarity with other human beings."

Albert Schweitzer 1875-1965,

German Nobel Peace Prize-winning mission doctor and theologian

President Obama signs the CRPD

On July 30, 2009, the President of the United States signed the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which is a treaty defining the rights of persons with disabilities under international human rights law, which affects more than 600 million persons with disabilities around the world.

Introducing this decision, President Obama stated, “Disability rights aren't just civil rights to be enforced here at home; they're universal rights to be recognized and promoted around the world.”

 

http://www.whitehouse.gov/the_press_office/Remarks-by-the-President-on-Rights-of-Persons-with-Disabilities-Proclamation-Signing/

 

The purpose of the CRPD is was to promote, protect, and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities and to promote respect for their inherent dignity. Expressed in the CRPD is the concept of reasonable accommodation, which is a new way to conceptualize the whole field of human rights. The Center for the Human Rights of Users and Survivors of Psychiatry (CHRUSP), with the leadership of Tina Minkowitz, played a significant role in negotiations on the text of the CRPD in advocating for the rights of users and survivors of psychiatry as well as the rights of all persons with disabilities.

 

For the first time in 34 years, the United States will this fall be examining its own record in regards to human rights and preparing a report for the United Nations Human Rights Council. The United States as a nation has never participated in this United Nations Universal Periodic Review of Human Rights before (UPR). Secretary of State Hillary Clinton stated that the Obama administration was "committed to holding everyone to the same standard, including ourselves."

 

The Office of the High Commissioner for Human Rights (OHCHR) is an office of the United Nations Secretariat mandated to promote and protect all rights established in international human rights laws and treaties. Located in Geneva, the OHCHR works to prevent human rights violations, secure respect for all human rights, promote international cooperation to protect human rights, and coordinate related activities throughout the United Nations.

 

According to the UN's Office of the High Commissioner of Human Rights (OHCHR), "The Universal Periodic Review (UPR) is a unique process which involves a review of the human rights records of all 192 UN Member States once every four years. The UPR is a significant innovation of the Human Rights Council which is based on equal treatment for all countries. It provides an opportunity for all States to declare what actions they have taken to improve the human rights situations in their countries and to overcome challenges to the enjoyment of human rights. The UPR also includes a sharing of best human rights practices around the globe. Currently, no other mechanism of this kind exists."

 

This UPR is an important first step to establishing a direct feedback from the people of the U.S.A. to the President about how our nation is doing in regards to Human Rights.

 

Medical Whistleblower is conducting a survey regarding Human Rights in the U.S.A. If you would like to be included in this survey please contact us at Medical Whistleblower, P.O. Box C, Lawrence, KS 66044

"The moral test of government is how it treats those who are in the dawn of life . . . the children; those who are in the twilight of life . . . the elderly; and those who are in the shadow of life . . . the sick . . . the needy . . . and the disabled."

- Hubert H. Humphrey

Our most basic common link is that we all inhabit this planet. We all breathe the same air. We all cherish our children's future. And we are all mortal.


John F. Kennedy 

Do You Know What a Cloud Dragon Looks Like?

Hearing before the Senate Committee on the Judiciary, Subcommittee on the Constitution, Civil Rights and Human Rights


4/29/14

Law Enforcement Responses to Disabled Americans, Written Testimony - Dr. Janet Parker DVM

Written Testimony of Dr. Janet Parker. DVM


Hearing before the Senate Committee on the Judiciary


Subcommittee on the Constitution, Civil Rights and Human Rights


“Law Enforcement Responses to Disabled Americans: Promising Approaches for Protecting Public Safety"


Tuesday, April 29, 2014


Chairman Durbin, Ranking Member Cruz, and distinguished members of the
Subcommittee


I want to thank you all for this opportunity to supply written testimony and for organizing this important hearing


Do You Know What a Dragon Looks Like?


Recently a friend suggested to me that I read a child's book called "Everyone Knows What a Dragon Looks Like" written by Jay Williams and illustrated by Mercer Mayer. Intrigued, I borrowed this richly illustrated and delightful child's book from the library and inside I found great wisdom. The story is simple and yet it reveals a deeper meaning. On the surface, it tells about a town on the border of China, threatened by the Wild Horsemen. The town elders need to decide how to defend themselves. After much discussion, they conclude that they do not have the resources to fight, they can not safely flee or safely surrender, and so they decide to do the only other option available to them - to 
pray that the Cloud Dragon will come and protect them. But the following day, when small fat bald man leaning on a wooden staff, crippled with old age and disability arrives at the gate and tells them that he is the Cloud Dragon, they do not believe him. So on a deeper level this story is about how we judge people by how they look and often do not see the abilities and skills that may lie beneath the surfaces of appearances. The small elderly disabled man offers to help them, but they instead treat him disrespectfully and dismiss him. But a child listens to this disabled elderly man, who claims he is the Cloud Dragon.


Because the child is respectful and also responds to the elderly man's requests for food and water, the Cloud Dragon consents to save the town of Wu.


During a crisis, people act in haste and often not with adequate forethought. Good crisis management involves identifying possible scenarios and determining in advance what actions would be appropriate to take. Strategically planning involves identifying all the possible actions and determining which are the best options.


The town of Wu elders gather to discuss options to respond to the threat of the Wild Horsemen but they find that they had not planned for this contingency. Their army is not prepared to fight and they do not have a disaster evacuation plan.
Crisis management also involves accurate discernment of what is a dragon? Is the dragon friendly and likely to help save the town? Is the dragon angry and might destroy the town? Is this a real threat? Is this perhaps a friendly and capable protective dragon? What does a dragon look like?


What does the little boy do to get the Cloud Dragon to help them? He listens. He considers the basic human rights needs of the elderly disabled man. He offers the Cloud Dragon food and water and talks to him politely. These are the basic principles on how to deal with a dragon - whether friendly or unfriendly.


Utilizing human rights principles, we must listen first, respect for human dignity permits meaningful conversation to ensue. We must listen with discernment and be willing to question our own beliefs - maybe even deeply held beliefs. Everyone in the town had a deeply held belief about what a dragon looked like. Each believed that a dragon who was likely to save the town would of course look like them. In reality the Cloud Dragon did not look like the savior they expected. Their discriminatory attitudes that dismissed the elderly disabled man, might have led to the destruction of the town, if it had not been for the willingness of a poor young lad to listen and to address the basic human needs of the Cloud Dragon.


So when faced with a crisis, one needs to apply these basic principles:


 Listen
 Address Basic Human Needs
 Act According to Human Rights Principles and in Compliance with Human Rights Law
 Involve and Empower Stakeholders


Listen


The city of Wu authorities were unwilling to listen to the old disabled man. They were angry at him for tracking dirt in onto their nice carpets and taking up their time. So they ignore him and send him away. If it weren't for the little boy, the Cloud Dragon would have departed and the town would not have been saved.


Dealing with persons with respect is essential. Listening to them. Sometimes this requires great skill to be able to discern from what they are saying - what a person may be trying to offer to do, what their skills and abilities really are. What do they really believe would be helpful? What can they really do?


If the disabled person is the one in crisis, then it is important to listen carefully so as to discern what is really wrong. Persons who are fearful, are in the moment of their distress often not able to accurately describe or articulate what the problem is. Thus the first responders must initially make the situation calmer, more controlled, less threatening to the person who is in crisis. Calling for authorities to come and coerce the person will lead to distrust and shut down meaningful communication. Ask them who they trust. Get a trusted person there to speak to them. Try to resolve the situation without using coercion or the overt threat of harm. Unjustifiable pressures for compliance can occur when persons are in positions of authority over the disabled person or have commanding influence, this can thus secretly mask a hidden problem of medical fraud, abuse or neglect. Persons with diminished autonomy are entitled to protection.


Address Basic Human Needs


The child in this story shares food and drink with the little old man - satisfying his basic human needs. The child speaks to him politely, with respect for his human person, treating him with human dignity. This gives the old disabled man the opportunity to self report his identity as a Cloud Dragon and to reveal his hidden skills and abilities. The child learned he should not assume what the old disabled man could do. Unlike the city elders, the young lad is willing to let the old disabled man demonstrate his abilities.


Hostage negotiators similarly often will provide food or water to a hostage taker, because they understand that basic human needs must be met before meaningful negotiations can occur. A disabled person in crisis similarly needs their basic human needs met before they can meaningfully engage in the discussion of other more complicated needs and problems. In addition disabled persons who come forward to assist authorities also need to have a secure stable environment for themselves before they can assist another person or take on meaningful exchange about issues and situations.


Act According to Human Rights Principles and in Compliance with Human Rights Law


Law enforcement officers need to protect the person as well as preserve the safety of the society at large. Often authorities employ a substituted decision making process that denies the disabled a voice in their own lives. Atrocious human rights violations have taken place when people with disabilities are stripped of their rights through denial of “legal capacity.” Under the existing legal system, being placed under guardianship is known as "legal death."


Thus when dealing with a person whose behavior has necessitated a crisis intervention, it is critically important to find out who that person trusts, if anyone. Constantly going back to persons who claim legal authority over the disabled person, but in whom the disabled person has no trust, may not improve the first responders assessment of what is really going on. A behavioral problem with a disabled person may be the first signal to the outside world that there is a serious situation of medical fraud, abuse or neglect. If you use a third party to act on the behalf of someone deemed incompetent - that person should be trusted by the disabled person and be someone most likely to understand the incompetent subject's situation and to be able act in that person's best interest.


Serious violations and discrimination against persons with disabilities may be masked as "good intentions" on the part of health professionals. What is being justified as beneficial “treatment” for people with disabilities can actually often be found to be psychologically damaging to them. Interventions that result in humiliation, isolation, injury and /or pain should not be considered appropriate.


Involve and Empower Stakeholders


In any crisis it is important to do a valid assessment of risks and also the benefits of a particular action. The term "risk" refers to a possibility that harm may occur. First responders need to resolve the situation quickly. Assessment of risk and benefit should involve input from the stakeholders - the disabled community themselves, not just social agency personnel or the substituted decision makers. Identifying alternative ways to address problems prior to an incident is also critical to speedy resolution of a crisis when it happens. Appropriate community supports and services are crucial to a resolution of a crisis situation and also important in the prevention of crisis. Greater attention should be paid to providing the services that are deemed by the disabled themselves to be most beneficial and effective. The lack of appropriate services for the disabled, however, is often a product of a lack of funding and planning – not because such alternatives are impossible to provide.


There has been an increasing reliance on drug therapy as opposed to non-drug therapies. There should be parity for persons wishing to use non-drug interventions and therapies and proper provision of community support and resources that does not coerce pharmaceutical management of, and substituted decision making for, all disabled persons. Community resources and programs should support informed decision making regarding the use of medications. Not all problems and situations can be resolved, nor improved with drug intervention. Masking the symptoms without getting to the root of the problem can lead to greater incapacity and even mask abuse problems - such as drugging to silence an disabled person so as to discredit their complaints against an abuser.


We have learned as a society that abusers often use the governmental authorities and the legal system to silence those who would speak out against the abuse. There is often a huge differential in the exercise of power between the disabled and those who are trying to coerce and control them, and increasingly financially exploit them as well. This power imbalance includes societal beliefs, institutional bias, legal authority as well as physical and psychological threatening behavior. Persons committing medical fraud will similarly try to silence whistle-blowers and mandated reporters who report medical fraud, abuse and neglect in an effort to protect the vulnerable.


We have as a society often discriminated against certain classes of persons and used them for medical research based on their availability, their compromised position, or their ease of manipulation, or because of their financial vulnerability, age, racial or ethnic minority. The Nazi's during World War II also used the disabled without their consent for medical experimentation, from those human rights abuses, we learned valuable ethical lessons which are now delineated in The Common Rule and the Belmont Report.


Given the possibility that these essential human rights and ethical concerns might be being violated, a crisis presented by the disabled person may actually need law enforcement scrutiny for proper protection of the person as well as the safety of the public. Abusive physical treatment, as well as sexual, psychological, emotional abuse can lead to confusion, embarrassment, depression, abandonment, loneliness, sadness, loss of dignity, powerlessness, helplessness, despair, and acting delusional. Negative reactions to abusive therapies including restraints or seclusion may include the following: fear, loss of control, vulnerability, anger, anxiety, depression, humiliation, loss of dignity, powerlessness, abandonment and despair. Thus a person who is being mistreated and who is in crisis may present with any of these symptoms.


Sending the person back to the abusive situation is not an appropriate law enforcement response.


The US government has a "duty to protect" those who are most vulnerable and to provide equal access to treatment and community integration for all those with disabilities regardless of what that disability might be. The assessment of dangerousness must be cautiously done with full regard to human rights. It is also necessary to prevent private parties from interfering with the right to health, as well as affirmatively provide adequate mental health and physical health services in a community setting. It is inherent in the right to health that all disabled persons should receive adequate access to health services including treatment facilities and preventative health services.
It is important when planning how to deal with a crisis involving the disabled, that we involve the disabled themselves in the planning and the execution. Nothing about us, Without us. Persons with disabilities are often endowed with many skills and abilities which are underutilized because society discounts their contribution because of hidden discrimination. Those who are themselves disabled may have meaningful insights to how to respond to a crisis. Disabled persons who are in crisis can themselves describe how they feel and what they believe would help them. Disabled persons who are on the pathway to healing physically, emotionally and psychologically can help others by being mentors and role models.


Do we actually know what a dragon looks like? Or do we assume that the solution is just what we always have done? Or that a dragon looks just like us? Do we consider new or novel approaches in our crisis action plans? Do we adequately assess the skill sets of disabled persons and utilize their abilities to the fullest and fully include them in the decision making process? Do we ask them what will be helpful?
In the planning and development of such community resources and facilities,and crisis intervention strategies, persons with disabilities must be empowered to have a voice and to be consulted as to what kind and type of services and facilities are most helpful.

 


Hearing before the Senate Committee on the Judiciary, Subcommittee on the Constitution, Civil Rights and Human Rights
4/29/14 Law Enforcement Responses to Disabled Americans, Written Testimony - Dr. Janet Parker DVM

“A true friend knows your weaknesses but shows you your strengths; feels your fears but fortifies your faith; sees your anxieties but frees your spirit; recognizes your disabilities but emphasizes your possibilities.”

- William Arthur Ward

10 Principles of Independent Living

10 Principles of Independent Living

Source: Statewide Independent Living Council of Illinois

  1. Civil Rights – equal rights and opportunities for all; no segregation by disability type or stereotype.
  2. Consumerism – a person ("consumer" or "customer") using or buying a service or product decides what is best for him/herself.
  3. De-institutionalization – no person should be institutionalized (formally by a building, program, or family) on the basis of a disability.
  4. De-medicalization – individuals with disabilities are not "sick," as prescribed by the assumption of the medical model and so not require help from certified medical professionals for daily living.
  5. Self-help – people learn and grow from discussing their needs, concerns, and issues with people who have had similar experiences; "professionals" are not the source of the help provided.
  6. Advocacy – systemic, systematic, long-term, and community-wide change activities are needed to ensure that people with disabilities benefit from all the society has to offer.
  7. Barrier-removal – in order for civil rights, consumerism, de-institutionalization, de-medicalization, and self-help to occur, architectural, communication and attitudinal barriers must be removed.
  8. Consumer control – the organizations best suited to support and assist individuals with disabilities are governed, managed, staffed, and operated by individuals with disabilities.
  9. Peer role models – leadership for independent living and disability rights is vested in individuals with disabilities (not parents, service providers or other representatives).
  10. Cross-disability – activities designed to achieve the first five principles must be cross-disability in approach, meaning that the work to be done must be carried out by people with different types of disabilities for the benefit of all persons with disabilities.

"It is a waste of time to be angry about my disability. One has to get on with life and I haven't done badly. People won't have time for you if you are always angry or complaining."

- Stephen Hawking

 

 

Medical Whistleblower is:

Calling on the United States to Ratify the UN Convention on the Rights of Persons with Disabilities

 

WHEREAS, the Convention is the first human rights treaty of the 21st century; and the President of the United States signed the treaty on July 30, 2009 and it is now necessary to ratify the treaty to give it the force of law.

 

WHEREAS, the United Nations General Assembly adopted by consensus a landmark treaty, the Convention on the Rights of Persons with Disabilities on December 13 2006, to promote and protect the rights of the world's 650 million Disabled people; and

 

WHEREAS, the Convention will require ratifying nations "to promote, protect, and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity" and promote awareness of the capabilities of those who have disabilities; and

 

WHEREAS, historically, persons with disabilities have been marginalized, stigmatized, and deprived of opportunities and freedoms afforded to individuals without disabilities; and the Convention also requires governments to fight stereotypes of people with disabilities; and

 

WHEREAS, WHEREAS, the Convention also recognizes that attitudes need to change if disabled people are to achieve equality; and

 

NOW, THEREFORE, BE IT RESOLVED that Medical Whistleblower as an advocacy network supports the UN Convention on the Rights of Persons with Disabilities (CRPD).

 

BE IT FURTHER RESOLVED that Medical Whistleblower will actively pursue a commitment from the United States to ratify the UN Convention on the Rights of Persons with Disabilities, and recommit ourselves as a country to human rights, empowerment and independent living for all people with disabilities of the world.

 

ACTION ALERT: Help Build Support for the UN Convention on Human Rights for Persons with Disabilities

 

The President of the United States, Barack Obama, chose to continue the U.S.'s historic role as a leader in the field of disability and human rights, and on July 30, 2009 signed the UN Convention on the Human Rights for Persons with Disabilities.

 

HOW YOU CAN HELP: You can help generate grassroots support to urge the U.S. Congress to follow President Barack Obama's lead and to ratify this critical international human rights document. Encourage your local and state governmental bodies and organizations to pass resolutions endorsing the UN Convention on Human Rights for Persons with Disabilities.

 

WHEN TO ACT: Now!

 

WHO: These are some organizations that you can approach:

 

1. Local city, county, town, and other municipal offices.

 

2. Local, state, and national organizations that focus on civil and human rights.

 

3. Local disability boards and commissions.

 

WHAT TO DO:

 

1. CALL the offices of these local and state governments, commissions, boards, and organizations and ask to speak to the staff person who handles policy or public affairs.

 

2. TELL THEM:You are disappointed that the United States has not yet ratified the UN Convention on Human Rights for Persons with Disabilities and that you want to ensure that the US actively participates in the quest for international human rights.

 

You believe that they can play a leadership role in convincing the President and Administration to sign the Convention. The Convention is consistent with and reinforces American values and principles. The US is proud of the progress made since passage of the Americans with Disabilities Act in 1990.

 

Ask your local government to pass a resolution in support of the Convention.

"Horus (civilization) and Seth (force) are unified by law."

Throne pedestal from Lisht, Sesostris I, anscient Egyptian pharao of the 12th dynasty, Middle Kingdom, as explained by Jan Assman, Professor of Egyptology at the University of Heidelberg in 'The Mind of Egypt' (ca. 1950 B.C.)

"Not everything that is faced can be changed, but nothing can be changed until it is faced."

- James Baldwin


Advocacy for Treaty Ratification CRPD by MWAN 4-27-2016

Medical Whistleblower Advocacy Network


Treaty Ratification – CRPD


Convention on the Rights of Persons with Disabilities


Written Testimony


Regarding: MWAN Submission to the Civil Society Consultation


Working Group Six


U.S. Department of State Marshall Center, Room 1482
April 27, 2016
10:00 AM – 12:00 PM


Medical Whistleblower Advocacy Network
Contact Name: Dr. Janet Parker DVM
Email: MedicalWhistleblower@gmail.com

 


Medical Whistleblower Advocacy Network (MWAN) acts as a grassroots advocate for human rights for disabled persons and other individuals. MWAN provides information, referrals, and also direct human rights defender advocacy services.


The United States should ratify the Convention on the Rights of Persons with Disabilities (CRPD) without any reservations, understandings or declarations that undermine the treaty. There are 57.8 million Americans who experience forms of disabilities, 5.5 million American veterans with disabilities, and 1 billion people with disabilities around the world today.


President Barack Obama signed the Convention on the Rights of Persons with Disabilities treaty in 2009 and sent it to the U.S. Senate for ratification. Medical Whistleblower Advocacy Network (MWAN), The National Council on Independent Living (NCIL) along with many other disability advocates including the U.S. International Council on Disabilities (USICD) encouraged the US Senate ratification of the CRPD. The National Council on Disability (NCD) has also strongly supported and encouraged the ratification of this first international treaty to address disability rights.


Former Senator Bob Dole lead a bipartisan effort of support to secure the 2/3 Senate vote needed for ratification. Unfortunately on December 4, 2012 the super-majority needed was not reached. Again in 2013 Foreign Relations Committee Chairman, Robert Mendez held two successful hearings on CRPD ratification, but because of opposition the CRPD was still not passed. Committee Chairman Mendez brought the matter again forward in 2014, supported again strongly by former Senator Bob Dole and many organizations for the disabled and veterans.


This treaty would extend the values of the Americans with Disabilities Act abroad and improve access for Americans with disabilities, including veterans, who live, work or travel abroad. Discrimination would become illegal in countries that sign the CRPD. Sidewalks would receive curb cuts for wheelchair users and others to cross the street. Bathrooms would become accessible and parking will be made available to people with disabilities.


There has been strong bipartisan support for the ratification of this important human rights treaty. But due to a mistaken view that it will somehow impose new requirements on the United States and current U.S. law, the Senate failed to ratify it. Nothing in the CRPD abridges the defining of disability as set forth in the Americans with Disabilities Amendments Act. In reality the treaty would not require cumbersome or burdensome regulations, because U.S. law is already more detailed and in most respects more comprehensive than the CRPD. But U.S. ratification would provide the United States with greater leverage to work with countries to align their framework with U.S. disability law and our understanding of the CRPD.


The United States of America must show true global leadership in promoting principles that protect the human rights of disabled persons worldwide, by setting an example for other nations and ratifying the CRPD. Through ratification of the CRPD the United States of America would demonstrate continued leadership for the principles of human rights on a global level. The CRPD does not infringe upon U.S. sovereignty. Ratification of the CRPD would actually strengthen the position of the United States as a global leader in human rights and encourage other nations in the world to follow the example set by the United States of America.


Just as in other treaties that the U.S. has ratified, the CRPD provides a framework within which international cooperation may occur, and encourages that within any international development assistance program there exists accessibility to persons with disabilities.


The CRPD offers people with disabilities things such as:


o Work and employment
o Respect for home and the family
o Freedom from exploitation, violence and abuse
o Adequate standard of living and social protection

Human Rights Yes!

The following finormation is from the curriculum Human Rights Yes! For more information, please contact the Human Rights Resource Center:

N-120 Mondale Hall
229 19th Ave S
Minneapolis, MN 55455

humanrts@umn.edu
(612) 626-0041
(888) HREDUC8 (888-473-3828)

"With us the circle stands for the togetherness of people who sit with one another around a fire, relatives and friends united in peace, while the Pipe passes from hand to hand. Once all the families in the villages were in turn circles within a larger circle, part of the larger hoop of the nation. The nation was only part of the universe, in itself circular….circles within circles, within circles, with no beginning and no end.

“To us this is beautiful and fitting; symbol and reality at the same time, expressing the harmony of nature and life. Our circle is timeless, flowing; it is new life emerging from death – life winning out over death.”

-Lame Deer: Seeker of Visions

Medical Whistleblower Advocacy Network 


Dr. Janet Parker DVM 


Written Statement for the Record 


The State of Civil and Human Rights in the United States 


Hearing Before the Senate Judiciary Subcommittee on the 


Constitution, Civil Rights, and Human Rights 


December 9, 2014 


 

 

Protection of Human Subjects: 


Human subject research includes experiments and observational studies in basic biology, clinical medicine, nursing, psychology, and all other social sciences. The Nuremberg Code and the related Declaration of Helsinki delineates what is considered ethical conduct for human subjects’ research and forms the basis for the US Code of Federal Regulations - Title 45 Volume 46 (The Common Rule). The Federal Policy for the Protection of Human Subjects or the “Common Rule” was codified in separate regulations by 15 Federal departments and agencies. The United States Department of Health and Human Services (HHS) regulations 45 CFR part 46 governs all federally-funded research in the United States. The United States Constitution should constrain the 
use of individuals in non-consensual experimentation, including non-consensual medical treatment and experimentation. Specifically, the Fifth and Fourteenth Amendments proscribe deprivation of life, liberty or property without due process of law. The Fourth Amendment proscribes unreasonable 
searches and seizures (including of a person’s body), and the Eighth Amendment proscribes the infliction of cruel and unusual punishment. Federal law also prohibits non-consensual clinical investigations of medical products on human subjects in the U.S., and in foreign clinical investigations 
when the data are to be used to support drug or device approvals. Control of pharmaceutical and device products is vested by statute in the Food and D
rug Administration (FDA) within HHS. The involvement of human beings in such research is prohibited unless the subject or the subject’s legally 
authorized representative has provided prior informed consent, with only very limited exceptions. A waiver of informed consent by the Institutional Review Board is supposed to be granted only in circumstances where the research presents no more than minimal risk to subjects, and the waiver will 
not adversely affect subjects’ rights and welfare. 


Human experiments have been performed in the United States which have been considered unethical, and were often performed illegally without the 
knowledge, consent, or informed consent of the test subjects. 


Vulnerable populations such as children, mentally disabled persons, prisoners, persons already suffering from disease or injury, financially 
disadvantaged, immigrants, or from a racial minority population were targeted for use by researchers. 


Research can be disguised as “treatment” but instead actually be a harmful or deadly experiment done without the patient’s knowledge or informed consent to treatment. Numerous court cases have been brought regarding psychiatric forced drugging and the lack of informed consent. 


Informed Consent: 


Informed consent is consent obtained freely, without threats or improper inducements, and after appropriate disclosure to the patient of adequate and understandable information in a form and language understood by the patient. Engaging in an informed-consent process between a clinical doctor 
and a patient should be an essential part of the standard of care in medicine. Informed consent is a process, not just a formality, and engaging in that process is of the essence of good medical care. Information must be provided to the patient in a timely manner and in accordance with the accepted standard of practice among members of the profession with similar training and experience. A health care professional may be legally liable if a patient does not give "informed consent" to a medical 
procedure and it results in harm to patient even if the procedure is properly performed. Adequate informed-consent process is not just a risk management process, it is good medical practice. Informed consent should define risks and potential benefits, but also take 
into consideration alternative treatments. Informed consent is an agreement to do something or to allow something to happen, made 
with complete knowledge of all relevant facts, such as the risks involved. There is a general right for all human persons to be free of inhuman treatment and individuals also have the legal right to privacy under international human rights law. International human rights case law supports the concept that individuals do have the legal right to decide whether a proposed medical treatment will be performed on them. The human right to decide one's own treatment does not disappear just because it is more convenient or financially more beneficial for the caregivers or for the family members of the individual to force treatment. This right to decide to refuse treatment is a human right we all enjoy. Mental health treatment under human rights law should be the same as other treatments in regards to consent to treatment. But it is a sad fact that this right has not necessarily been consistently protected and thus through our mental health systems extended to people with mental disabilities. Patients need to have the intellectual capacity to understand basic information about their diagnosis and proposed treatment. 


Correspondingly doctors have a responsibility to communicate the information in terms the patient can understand and to make efforts to be available to answer questions the patient may have. Skepticism by the patient in such circumstances does not mean that the person does not have capacity to make treatment decisions. Even if the patient, due to their disability, cannot believe the doctor's diagnosis that doesn't mean that the patient does not have capacity to make treatment decisions. Essentially, people have the right to make treatment decisions under Principle 19 of the UN's "Principles for the Protection of Persons with Mental Illness." 


Because those with mental health disabilities are often detained, this then often automatically leads to forced treatment. This does not necessarily need to happen. It is not theoretically inconsistent with confining someone in a psychiatric facility, but still leaving them with the authority to decide treatment decisions. No treatment should be provided except in emergency situations until a determination of capacity has been made through a judicial hearing for treatment decisions. The hearing must be by an independent arbiter, and be judicial in character. In addition there must be a right of the patient to return for re-consideration of the situation at regular intervals. A hearing to determine incapacity is required. Persons, who are lacking capacity, are often 
institutionalized and over -medicated. These psychiatric medications may adversely affect the individual's quality of life and even shorten the person's life expectancy. Thus it is important that over-medication minimized, the views of the patient are considered and the quality of life issues explored. 
So an effective means of reviewing the treatment plans is important. 


Human Rights of Wards of the Court: 


Wards of the court have surrogate decision makers for both legal and medical decisions, thus wards are prevented even from effective appeal to the Judge or even to their US Congressmen/Congresswomen. In the U.S.A. the guardianship system offers few procedural protections, and has spawned a profit-driven professional guardianship industry that often enriches itself at the expense of society’s most vulnerable members—the mentally ill. 


A majority of jurisdictions do not require personal visits to the incapacitated individual. Financial resources are transferred to the guardians, thus leaving the individuals with diminished capacity, in complete dependency on the guardians’ decisions. According to a study in the Los Angeles Times, more 
than half of all guardianship petitions filed by professional guardians in Southern California between 1997 and 2003 were granted by the courts on an emergency basis. Of these emergency appointments, 56 percent were granted without notice to the proposed ward, 64 percent before an attorney was selected to represent the ward, and a stunning 92 percent before an otherwise mandatory court investigator’s report. The courts are being swamped with new applications for guardianship– many of them under the 
guise of emergency guardianship, thus allowing medical proxy decision makers to make legal decisions about patients in many cases without notifying the patient or the patient's family. Emergency placements are prone to abuse by the professional guardianship industry and professional guardians making financial decisions for their own self -interest. Professional guardians know how to manipulate 
the medical and court system to use procedural loopholes of the emergency guardianship procedure to gain legal and financial control over the ward’s rights and assets and total control over the ward’s medical care. For profit “professional” guardians are allowed to be compensated from their wards’ 
accounts for the services they provide, and many have seized the economic opportunity presented by the incapacity of others by making a business of acting as a guardian. They have cooperative business financial relationships with a variety of service providers such as doctors, hospitals, lawyers, courts and 
government agencies responsible for mental health care. By the time the family realizes what is happening legally behind closed doors, the legal process is already completed and guardianship has been granted by the court. Without ever talking to the patient or the family, Judges a re making life 
changing decisions about these proposed wards. Thus the ward, who has the most to lose in these proceedings has often little or no input, in addition family members may not even be appraised of the court proceedings until after emergency guardianship has been already established – thus depowering 
them to act as advocates for their family member. A Los Angeles Times investigation similarly uncovered numerous instances of egregious abuse by guardians where evidence of abuse was already in the courts’ own files. Nearly 75 percent of America’s courts do not have a computerized data system to 
track guardianship cases and identify problems. Nearly 20 percent of courts do not require annual accounting of a ward’s finances. Among courts that do 
col
lect such information, more than one third do not have an official who is designated to verify the content of the guardians’ reports, and less than 
20 percent verify every report. In more than 40 percent of courts, no one is assigned to visit individuals under guardianship to determine if they are being abused or financially exploited. Judges often out of expediency grant the guardian complete powers over a ward despite the principle of limited 
guardianship. It is important that the guardian stands for the human rights of the ward not for compliance with the hospital or doctors' wishes. Judges accept without question the written documents submitted by the medical proxy decision makers, without questioning their financial and sometimes 
pharmaceutical research related motives. Judges should instead make sure that they do true substantial judicial due diligence and insist that wards are transported to the court or that in some manner direct face -to-face communication is established with the Judge. Judges 
need to question whether a drug that is not approved by the FDA needs to be used on a ward of the court 
– 
especially in light of growing 
evidence of adverse effects, lack of evidence of efficacy and successful litigation against the drug 
manufacturer. For
cing wards of the court to take medications that are “off
-
label” 
– 
not approved for 
that use by the FDA, is tantamount to human experimentation on the vulnerable wards of the court. The 
ward has no legal ability to sue the pharmaceutical company for any ha
rm he/she suffers even long
-
term disability, torture or even death result. Given that these drugs are expensive, have potentially 
severe side effects, and have limited evidence supporting their effectiveness off
-
label, they should 
perhaps be used with gre
ater caution. 


Human Rights of Children: 
Persons with mental health challenges still retain their human rights to 
informed choice in care, participation in family life and deserve respect for their human dignity. 
Children have fundamental human rights, even 
if they do have a mental disability. Parents have a 
fundamental right to decide what medical treatment is appropriate for their own children. Coerced 
mental health screening programs have no place in a free society, neither does coerced medication. 
Under 
universal screening programs, many children receive stigmatizing diagnoses that handicap them 
for the rest of their lives. The Medication Algorithms proposed by the pharmaceutical industry have 

 

resulted in many thousands of children being medicated by exp
ensive, ineffective, and often dangerous 
drugs. Children and young people have limited or no ability to make their own medical choices. 
Parents and guardians often are not given full information about treatment options. In the foster care 
system parents l
ose custody of their children and the children are not permitted to refuse treatment or 
have any meaningful input into the treatment they receive. Thus in the U.S.A we have a system of 
institutionalized injustice to minors entrusted to the Foster Care syst
em. Coming from backgrounds of 
abuse and trauma, these emotionally vulnerable young people are exposed to physical, emotional, 
psychological and sexual abuse that often occurs in youth psychiatric facilities. Often these young 
people have committed no crim
e, but are detained against their will, and decisions about their care is 
made based on the type of health insurance they have (public or private), rather than their health needs. 
In the U.S. institutions are often overcrowded, poorly maintained. This is b
oth unjust and 
discriminatory. Not surprisingly foster children exposed to such situations are unable to adjust to 
independent living when they reach adulthood and end up in large numbers in the U.S. prison system as 
adults. In addition, the pharmaceutical 
industry's successful marketing of drugs to this captive 
population of children has led to children as young as two years old given mood stabilizers and 
antipsychotics even before they are even able to speak. It is estimated that over 8 million children 
are 
drugged in the U.S.A. with 1,300 deaths due to this practice. 


Human Rights of Minorities: 
Experts admit that mental health diagnoses are inherently subjective. 
Even according to the 1999 "Mental Health: A Report of the Surgeon General," there are seri
ous 
conflicts even in the medical literature about the definitions of mental health and mental illness. These 
very definitions are rooted in subjective value judgments that vary across cultures and are subject to 
bias and prejudice. Mental illness is based 
on behaviors observed by others and subjective reporting, 
while physical illness is able to be objectively measured by verifiable physical signs. Because of 
inherent subjectivity and lack of objective verification, it’s all too easy for a psychiatrist to 
label 
disagreement with political and/or social beliefs to be a mental disorder. Thus mental illness is 
commonly diagnosed in minority groups with greater frequency
– 
possibly because of personal bias and 
cultural differences. But it is also evident that 
minorities have less access to, and availability of, mental 
health services. There is an inequality in the U.S.A., racial and ethnic minorities collectively experience 
a greater disability burden from mental illness than do whites. Minorities receive less 
care and poorer 
quality of care. Drug
-
metabolizing enzymes found primarily in the liver (CYP450) are a major 
determinant of therapeutic drug response. There are well 

established differences between Caucasians, 
Black populations and Asians in regards to 
how they metabolize neuroleptic drugs. African Americans 
and Asians have slower metabolic rates compared with Caucasians. Common clinical practice, 
supported by controlled clinical studies has led to a reduction in dosage recommendations for many 
antidepr
essants and neuroleptics for these ethnic groups. (Bradford & Kirlin 1998) 


Human Rights of Veterans: 
The Veterans Administration was paying for medication “off
-
label” 
that was not effective or safe. Although Risperdal® (risperidone), which is a second 
generation anti
-
psychotic drug, is approved to treat severe mental conditions such as schizophrenia and bipolar 
disorder, the US Veterans Administration doctors were prescribing the drug “off
-
label” to treat Post 
Traumatic Stress Disorder or PTSD. But a 
study by Veterans Administration researchers published in 
the Journal of the American Medical Association concluded, "Treatment with risperidone compared 
with placebo did not reduce PTSD symptoms." 


Effects of Psychiatric Medications: 
Psychiatric medicatio
ns have unpleasant and sometime 
irreversible side effects that 
make them extremely undesirable to patients. These side effects include: 
vomiting, erectile dysfunction, difficulty concentrating, anxiety, dry mouth or excessive salivation, 

 

depression, feelin
g tired all the time, sleep disturbances or 
nerve damage. Patients can have coherent 
and valid reasons for refusing medication. Many patients have rational reasons for rejecting treatment 
and concerns about the severe and potentially life
-
threatening sid
e effects of psychotropic medications. 
Serious side effects include tardive dyskinesia, neurololeptic malignant syndrome, and akathisia. In 
addition chronic use of these medications can lead to Parkinson’s disease symptoms, chronic psychosis, 
as well as 
early death. Many patients wish to discontinue their medication and need competent medical 
help to do so. 


According to the National Institute of Neurological Disorders and Strokes of the National Institutes 
of Health, antipsychotic drugs can cause neurol
eptic malignant syndrome, a life
-
threatening 
neurological disorder. Additionally, the National Institutes for Mental Health (“NIMH”) has found that 
long
-
term use of antipsychotic medications can cause tardive dyskinesia, a potentially incurable and 
disfig
uring condition that causes muscle movements a person cannot control. For long
-
term psychiatric 
patients the chance of contracting tardive dyskinesia from psychotropic drugs is approximately one in 
four. The published rate for tardive dyskinesia among peop
le who stay on the older drugs is 
approximately 3
-
5% per year 

if you stay on these medications, for ten years, the risk of developing 
TD is 50%. (Dr. Grace E. Jackson MD ‘What Doctors May Not Tell You About Psychiatric Drugs’ 
Public Lecture, UCE Birmingh
am June 2004) 


One of the most common side effects of antipsychotic drugs is a condition known as 
akathisia

which is marked by uncontrollable physical restlessness and agitation and by interminable pacing, 
shaking of arms and legs, foot bouncing, and an
xiety or panic. 
When this side effect occurs it is often 
mistaken for symptoms of mental illness itself. Then even more antipsychotic medication is 
administered due to a psychiatrist’s erroneous perception that the signs of akathisia are actually 
symptoms 
of disease, with increased medication the patient’s agitation and panic therefore increase. 
The opposite type of side effect is 
akinesia
, which is typified by drowsiness and the need to sleep a 
great deal. This effect is appreciated by those wishing to 
chemically restrain patients and prevent their 
moving around or demanding care in the middle of the night. This also allows caretakers to ignore 
patient’s various medical problems and use ever increasing amounts of drugs to achieve the desired 
ends. This 
is not treatment of the underlying disease but instead forced drugging for the convenience 
of the caretakers. In addition, polypharmacy, which is the prescribing for a single person of more than 
one drug of the same chemical class (such as anti
-
psychotic
s), is widely practiced despite little 
empirical support, and can result in serious adverse reactions and intensified side effects and can lead 
to early death. 
Persons, who are lacking capacity, are often institutionalized and over
-
medicated. This 
not on
ly adversely affects the individual's quality of life and but can even shorten the person's life 
expectancy. 
There is a lot of research that indicates that there is decreased life expectancy for persons 
taking neuroleptic medication. One study by Joukam
aa published in the British Journal of Psychiatry 
in 2006 followed 99 people diagnosed schizophrenic for 17 years. The study found that if the person 
received even one neuroleptic drug there was an increased risk of dying by 3 fold (35% died). If given 
3 n
euroleptic drugs that increased the risk of dying in 17 years by 7 fold (57% died). Thus it is 
important that over
-
medication minimized for all mental health patients. 


Off
-
Label Use of Psychiatric Drugs: 
Once a drug has been approved by the Food and Drug 
Administration (FDA), clinicians are free to prescribe it as they see fit. Because there often is not the 
same level of high 
-
quality clinical research demonstrating the safety and efficacy of these drugs for 
non

FDA
-
approved indications, the benefits of s
uch off
-
label use are usually unclear. “Off
-
label” use 
of anti
-
psychotic medications is common, particularly among the elderly and children/adolescents. 
In 
the United States, the medical community is focused on profits and market forces have resulted in 

 

psychiatric medications prescribed for patients who are dependent in some way to the social welfare 
system. Psychiatric medications for schizophrenia alone cost the US taxpayer 3.5 million dollars a day. 
Pharmaceutical companies have spent huge amounts o
f money to lobby the US Congress for legislation 
that will minimize their legal risk and maximize their profits. The medical professionals, doctors, 
nurses, hospital social workers, pharmacists, and therapists are all financially dependent on the profit 
ma
king aspect of medicine for their economic livelihood. This has resulted in a high rate of 
prescription of psychiatric medications for "off
-
label" use in the absence of good evidence of 
effectiveness. Once a drug has been approved by the FDA, clinicians a
re free to prescribe it as they see 
fit. Because there often is not the same level of high
-
quality clinical research demonstrating the safety 
and efficacy of these drugs for non

FDA
-
approved indications, the benefits of such off
-
label use are 
usually uncl
ear. Given that these drugs are expensive and have serious side effects (Including: weight 
gain, diabetes mellitus, tardive dyskinesia, and extrapyramidal symptoms), their off
-
label use may 
represent significant risk and cost with undemonstrated clinical 
benefit. “Off
-
label” use of anti
-
psychotic medications is common, particularly among the elderly and children/adolescents. Medicaid 
is the primary payer for patients with schizophrenia in the United States, with over a third of 
individuals with schizophre
nia receiving their care through state Medicaid programs. The cost of anti
-
psychotic medications has been rapidly escalating and now makes up a considerable share of Medicaid 
prescription drug programs. The public financing for anti
-
psychotic medications 
has been roughly 
equally divided between Medicaid and Medicare. It is estimated that Medicaid currently pays for more 
than 70% of all the antipsychotic prescriptions in the United States. 
In 2008, Medicaid spent $3.6 
billion on antipsychotic medications
, up from $1.65 billion in 1999, according to Mathematica Policy 
Research, which analyzes Medicaid data for HHS. Medicaid spends more on antipsychotics than on 
any other class of drugs. 
In one study of data from the Medicaid programs of 42 states from 2
003 they 
found a considerable degree of off
-
label use of these drugs, with 57.6% of patients who were given 
anti
-
psychotic medications having no visit with a diagnosis of either schizophrenia or bipolar disorder 
during the year. (Leslie 2012) The FDA ini
tiated regulatory actions to address reports of increased 
suicide rates on these psychiatric medications. One of these actions was to require a black box warning 
label for the new anti
-
depressants that warned of increased risk for violent tendencies, inclu
ding 
suicide, caused by these medications. 


Off
-
Label Promotion/Deceptive Marketing of Psychiatric Drugs: 
The practice of marketing 
drugs for purposes not backed by science is called “off
-
label promotion.” 
The Food and Drug 
Administration which regulates 
prescription drugs and has not adequately regulated the “off
-
label” 
promotion of Risperdal by Johnson & Johnson Pharmaceutical Co. and its Janssen subsidiary. The FDA 
was aware of grave concerns regarding its safety and clear indication that it is not eff
ective for the 
conditions it is prescribed for. Johnson & Johnson
-
Janssen's “off
-
label” promotion of Risperdal through 
Teen Screen was targeted to young adolescent boys. Johnson & Johnson's subsidiary
-
Janssen 
strategically marketed Risperdal
-
a drug design
ated for narrow use in the treatment of schizophrenia, 
into a $34 billion dollar profit making drug, with a 97% profit rate. (Applbaum 2012) This 
antipsychotic drug, Risperdal cost 40
-
50 times as much as the first generation antipsychotics. 
Risperdal i
s a second generation antipsychotic (SGA). Their marketing strategy caused the drug to be 
used preferentially to older generic versions of antipsychotic medications (FGA
-
first generation 
antipsychotics). 
Doctors are encouraged or pressured to treat their 
patients with the newest, most 
expensive drugs and they are discouraged from using the cheaper generic medications. The newer 
drugs often did not have extensive clinical trials before their “off
-
label” use, therefore the full dangers 
of the medication and 
possible adverse side effects were often unknown or not reported. 
Research 
studies delineating concerns for the newer drugs’ safety and efficacy were suppressed. 
The Food and 

 

Drug Administration sent warning letters sent to Janssen which questioned the 
company’s marketing 
claims that its drug was superior to first generation antipsychotics or safer. Instead the pharmaceutical 
industry bypassed governmental safeguards and medical review by using political pressure on select 
governmental officials. When 
oral Risperdal was headed to be off patent and generic forms of it would 
have become available. Jansen promoted its long
-
acting version of Risperdal

Consta injectable to be 
recommended in the Texas Medical Algorithm Project (TMAP). (Rosenheck et al 2011) 
Marketing of 
Consta was focused on hospital inpatients because it is rare for stable patients to be switched to a 
different drug once they are discharged from the hospital. Patients were switched while still in the 
hospital to the still patented injectab
le Risperdal while still in the hospital before discharge. 
The 
pharmaceutical industry spent and continues to spend millions on lobbying Congress to effect changes 
in legislation favorable to the pharmaceutical industry’s bottom line including changes in t
he Medicaid 
Act 2003. These changes allowed the federal government to pay through Medicaid for psychiatric 
drugs used for “off
-
label” (extra 
-
label) uses. What may appear as a consensus of medical approval is a 
carefully planned marketing effort to influe
nce medical decisions on mental health care. 
Among the 
many marketing strategies used by the pharmaceutical industry are: 1) One
-
to
-
one detail marketing to 
doctors and professionals 2) Continuing education seminars and sponsorship 3) Pharmacy specific 
adv
ocacy groups 4) Ghost
-
writing of “scientific” articles and dissemination of unsupported 
“medication algorithms” 5) Direct
-
to
-
consumer advertising 6) Intense legislative lobbying 7) 
Suppression of research findings through control of research findings and r
esearch grantees 8) Illegal 
marketing of psychotropic drugs for off
-
label purposes 9) Bribing state officials with cash payments to 
add atypical antipsychotics on Medicaid formularies. The National Alliance on Mental Illness 
(NAMI) provides pharmaceutica
l grassroots political support and distributes pharmaceutical 
educational materials used to support and expand off
-
label use of patented psychiatric drugs. 


The New Freedom Commission on Mental Health: 
The controversial New Freedom Commission 
on Mental Heal
th was established by the 43rd U.S.A. President, George W. Bush, with Executive Order 
13263 of April 29, 2002. The Commission was established to conduct a comprehensive study of the 
U.S. A. mental health service delivery system and make recommendations b
ased on its findings. The 
Commission issued its report on July 22, 2003. President Bush has instructed 25 federal agencies to 
develop a plan to implement the Commission’s recommendations. In 2004, Congress appropriated $20 
million to finance the recommend
ations of this New Freedom Commission on Mental Health. Congress 
also passed the Garrett Lee Smith Memorial Act that included $7 million for suicide screening and tens 
of millions more for Substance Abuse and Mental Health Services Administration and its C
enter for 
Mental Health Services. The No Child Left Behind Act already included $5 million for Mental Health 
Integration. This was a part of a federal plan to subject all children to mental health screening in school 
and during routine physical exams. This 
was an effort to force millions of kids to undergo psychiatric 
screening whether their parents’ consent or not. The New Freedom Commission on Mental Health 
recommended increased use of pharmaceutical interventions despite the Food and Drug Administration 
(FDA) objections. 


Texas Medication Algorithm Project (TMAP): 
The Texas Medication Algorithm Project or 
TMAP was described as a thinly veiled proxy for the pharmaceutical industry, which pursued profits by 
recommending more psychotropic medication interv
entions. TMAP had been created in 1995 while 
President Bush was governor of Texas. It formed as an alliance of individuals from the University of 
Texas, the pharmaceutical industry, and the mental health and corrections systems of Texas. The New 
Freedom C
ommission on Mental Health used TMAP as a blueprint and began to recommend screening 
of American adults for untreated mental illnesses and children for emotional disturbances. The 
commission, using the Texas Medication Algorithm Project (TMAP) as a bluepri
nt, subsequently 

 

recommended screening of American adults for possible mental illnesses, and children for emotional 
disturbances. The primary purpose was to recommend implementation of TMAP based algorithms on a 
nationwide basis. The strategy behind the co
mmission was developed by the pharmaceutical industry, 
and the goal was to identify all those with suspected disabilities who could then be provided the newer 
psychoactive drugs. The pharmaceutical industry’s marketing concept behind Texas Medication 
Algo
rithm Project (TMAP) was to standardize treatment through the imposition of a strict algorithm. 
Mental health care has evolved into a revolving door between state mental hospitals and prisons, where 
patients flow through these facilities and leave with pre
scriptions for the medications they were treated 
with while institutionalized. Most of these patients will rely on Medicaid or Medicare to pay for the 
drugs. Forcing prisons and state mental hospitals and other community mental health centers to 
prescribe 
medications based on a pharmaceutical industry marketing model permits “patient 
recruitment and retention” in pharmaceutical industry terms. This has been translated to clinical 
marketing terms emphasizing client compliance to the treatment regime and adh
erence to a particular 
drug. 


Financially responsible governmental policy regulators and governmental agencies attempted to put 
in place cost containment measures which were meant to limit the escalating seemingly unlimited cost 
of psychiatric medications 
now borne by the US taxpayer. State legislatures started drafting measures 
that would permit them to regulate prescription drug prices for state employees, Medicaid recipients, 
and the uninsured. Like managed care plans, they were creating formularies of 
preferred drugs. One 
such cost containment measure was the requirement that a "consumer" can only receive a specific 
service or treatment if the service/medication is first screened and approved by the paying insurance 
company. The Medication Algorithm 
Project (MAP) was instituted, so that "prior authorization" 
requirements by Medicaid would not prevent customers from buying expensive newer psychiatric 
medications that had just been patented

In 1995, as part of a marketing strategy, the pharmaceutical 
industry started to push for Medication Algorithm Project guidelines that would dictate what 
medications would be prescribed. The Texas Medication Algorithm Project (TMAP) is a decision
-
tree 
medical algorithm that gives guidelines for what medications to p
rescribe. Political pressure was 
applied on state decision makers to have these guidelines implemented within state of Texas Mental 
Health and Mental Retardation guidelines which would thus make it difficult for state Medicaid 
auditors to make decisions ou
tside these guidelines. With state issued guidelines, doctors didn't need to 
worry about choosing which medication is most effective, but instead just go by the MAP chart. 
Pharmaceutical industry representatives suggested which drugs should be the first, 
second, third, 
choice. All the doctor needs to do is prescribe the drugs in that order, if the first doesn’t work, the 
doctor prescribes the second on the list. Doctor's don't need to research the newer drugs and determine 
what is best for a particular p
atient 

they just prescribe according to the list recommended by the state 
agency MAP chart. The legal malpractice risk of making a wrong choice is then transferred to the state 
agency which has legal immunity and thus the choices are already made by phar
maceutical industry 
representatives. If an adverse event happens (i.e. suicide or murder) the doctor can legally fall back on 
the fact that the state agency recommended his prescription choice. This has also opened the door to 
prescription authority exten
ded to physician assistants and nurse practitioners, who do not have the 
same extensive medical training that is required for an M.D. The use of a Medication Algorithm meant 
that the legal risk of a malpractice claim was lowered to almost nil, shifting le
gal responsibility to the 
state which has legal immunity. This meant decreased malpractice insurance costs for these less 
qualified medical practitioners. The drug companies involved in financing and/or directly creating and 
marketing TMAP include: Jansse
n Pharmaceutica, Johnson & Johnson, Eli Lilly, and Austrazeneca, 
Pfizer, Novartis, Janssen
-
Ortho
-
McNeil, GlaxoSmithKline, Abbott, Bristol Myers Squibb, Wyeth
-

 

Ayerst Forrest Laboratories and U.S. Pharmacopeia. The pharmaceutical industry repressed clinical 
research information about adverse events, while paying university professors and other respected 
medical professionals to ghost write articles favorable to their products. Doctors can be unduly swayed 
by pharmaceutical company promotional messages which 
are spread through supposedly neutral 
continuing educational events and written material. The Texas Medication Algorithm Project (TMAP) 
was supported by state governmental authorities and has been imported to other states such as 
Pennsylvania and TMAP curr
ently impacts mental health care in at least 17 states. (Healy 2006, 2008) 
Doctors stopped using their discretionary options and instead started to prescribe according to the MAP 
chart because of legal ramifications of not practicing the "standard of care
." The Medication Algorithm 
Project (MAP) was created by the pharmaceutical industry leaders as a marketing tool with little valid 
scientific research to back MAP recommendations. In reality, the FDA was pressured to overlook clear 
dangers of medications i
n the MAP model and to continue to allow drugs to be sold to vulnerable 
patients with serious and even fatal adverse effects. Research into the dangers of the increased use of 
psychiatric medications recommended by the MAP has been suppressed. 


Allan Jones 
was the former investigator in the Commonwealth of Pennsylvania Office of Inspector 
General (OIG), Bureau of Special Investigations. As a human rights defender and medical 
whistleblower, Alan Jones, investigated for the Office of Inspector General of FDA. 
He delivered a 
scathing report on the fraudulent behavior of the pharmaceutical industry and its political control over 
both legislation and regulatory functions. OIG Investigator Allen Jones’ report indicated that key 
administrative governmental regulat
ory employees in Pennsylvania were closely aligned to drug 
manufacturers. These officials working in cooperation with pharmaceutical industry insiders 
manipulated the regulatory agencies to turn a blind eye to the excessive profits of the pharmaceutical 
c
ompanies and to permit wholesale marketing at taxpayers’ expense of psychotropic drugs. 
(Jones, 
Allen, “Introduction to the documents on Big Pharma Corruption in Research & Clinical Trials,” 
Revised January 20, 2004 http://psychrights.org/) 


In addition to 
pressuring medical professionals to prescribe these medications, the pharmaceutical 
industry has put a great pressure and influence on the American Psychiatric Association Task Force 
which writes the Diagnostic and Statistical Manual of Mental Disorders (
DSM), the manual of mental 
health diagnoses. These changes in the DSM will increase the number of persons diagnosed with 
mental illness. (Carey 2012) The new manual the DSM V that is just now coming out has been written 
with the strategic marketing pharmac
eutical industry objectives in mind. Therapists and clinicians use 
the DSM IV to do their billing codes, and thus their ability to get paid is based on how they comply 
with the diagnostic guidelines in the DSM IV. Allen Frances, MD, who chaired the DSM

IV 
Task 
Force, voiced considerable concern for the implications of the new edition. The newer version of the 
diagnostic manual, the DSM V is now being boycotted in protest by many mental health stakeholders, 
psychiatrists, clinical psychologists, therapists 
and psychiatric social workers. (Carney J 2012) 


Adverse Effects of Neuroleptic/Anti
-
psychotic Medications: 
These neuroleptic and anti
-
psychotic 
medications can have profound negative effects including what could be called “inner torment” or what 
is calle
d clinically akathisia. 
Akathisia 
is one of the most common side effects of antipsychotic drugs 
and causes uncontrollable physical restlessness and agitation and by pacing, shaking of arms and legs, 
foot bouncing, and anxiety or panic. When this side effe
ct occurs it is often mistaken for symptoms of 
mental illness itself and then the psychiatrist's erroneous assumption will lead to even more anti
-
psychotic medication being administered. With the subsequent increased dosage, the patient’s agitation 
and pa
nic therefore increase, leading to a terrible feeling of inescapable physical and mental turmoil, 
this sometimes leads to acts of violence. When patients are confronted with such feelings of 

 

restlessness, agitation, and incoherent thoughts caused by the ps
ychiatric medications they often have 
racing thoughts of violence even suicide. This is why these medications carry a Food and Drug 
Administration black box warning label stating that they can cause violent thoughts, actions and even 
suicide. Neuroleptic 
adverse reactions are related to behavioral changes such as akathisia. In the late 
1970's, akathisia was formally recognized and known to be a predisposing factor to violence. (Keckich 
1978) These neuroleptic medications are highly addictive and the br
ain becomes dependent on them 
for normal functioning and thus withdrawal can have serious symptoms including irritability and 
agitation. Thus suddenly going off these medications can make patients extremely emotional, agitated, 
less inhibited, suicidal and 
even violent. During a patient's withdrawal period, any perceived untoward 
disrespectful attitudes or verbal communications can trigger violence. Neuroleptic Induced Akathisia 
(NIA) can lead to violence, including mass murder, as was seen in the Columbi
ne Shooting, when Eric 
Harris while on Luvox murdered his classmates. 


Political Pressure to Influence Legislation: 
N
o mental health profession and no professional 
activity is safe from the $200 billion pharmaceutical industry financial and political infl
uence. The 
largest growing portion of that market is now psychiatric medications which are highly profitable 
products but of dubious benefit. Pharmaceutical companies spend a majority of their funds in 
marketing rather than research and development. Finan
cial and political power allows the 
pharmaceutical industry to push their legislative agenda through Congress, influence regulatory actions 
of the FDA, and to control research at academic medical centers. Public research institutions funded by 
tax dollars 
are doing the basic research for the drugs, but the actual clinical trials are funded privately 
by the drug companies. Off
-
label drug use clinical data is used to expand FDA approval to additional 
diagnoses. In order to make patented drugs look better tha
n they really are clinical research trials are 
rigged. Government granted exclusive marketing rights are extended for years by protective and 
aggressive industry lawyers. They also flood the market with copycat drugs of the same general class 
of drugs th
at cost a lot more than the drugs they mimic, but really are no more effective. The 
pharmaceutical industry has found that clinical safety trials are costly to perform. Instead they have 
sifted their emphasis to political pressure on targeted government o
fficials to sway public policy 
decision making and thus be able to use federal tax dollars to pay for “off
-
label” use of welfare 
recipients as their human subjects. Controlling the decisions of the medical proxy decision makers is 
therefore their focus rat
her than making sure that medications are approved by the FDA as safe and 
effective. The pursuit of the almighty dollar often overshadows corporate responsibility to the public. 
Annually, the pharmaceuticals industry spends nearly twice as much on market
ing as it spends on 
research and development. According to the Center for Public Integrity the pharmaceutical and health 
products industry has spent more than $800 million in federal lobbying and campaign donations at both 
federal and state levels in the 
past seven years. (PublicIntegrity.org) The Supreme Court Decision, 
Citizens United v. Federal Election Commission has now even further extended the pharmaceutical 
companies influence over policy makers through unbridled secret contributions to 501 c 4 
or
ganizations which then can lobby legislators on behalf of the pharmaceutical industry. Individual 
citizens of the U.S.A., especially persons with mental disabilities, cannot compete with equal lobbying 
actions to the pharmaceutical industry. Indeed, many 
with mental health diagnosis are actually stripped 
of their right to vote and even their right to petition their elected representatives for issues crucial to 
their human rights. Surrogate decision makers often controlled by the medical proxies make voting 
decisions for the wards and thus vote pro
-
pharmaceutical interventions. The human rights of wards are 
lost in this political exercise of power. Today the pharmaceutical industry has unprecedented ability to 
spread money to influence thinking, mental healt
h practice, and policy making. We need to impose 
reasonable restrictions on those who can exercise such immense financial and political power. 

 

 

Myths and Stereotypes about People with Disabilities

People with disabilities -

  • cannot be self-sufficient/are excessively dependent;
  • are to be pitied
  • are helpless
  • are cursed/disability is a punishment for evil
  • are bitter because of their fate
  • resent the non-disabled world
  • have lives not worth living
  • are better off at home
  • cannot work
  • cannot have a family/cannot be good parents
  • are asexual
  • need to be cured and helped by medical professionals
  • need special, separate educational programs
  • cannot be involved in cultural/recreational activities
  • are unable to learn
  • (People with intellectual disabilities) are naive, like children,
    and cannot make any decisions for themselves
  • (People with psycho-social disabilities) are dangerous/a threat/violent
  • must use alternative ways of communicating because they are stupid.

 

"I am neither an optimist nor pessimist, but a possibilist."

- Max Lerner

 

ATTITUDES AND PERCEPTIONS REGARDING DISABILITY

 

 

ATTITUDES AND PERCEPTIONS

REGARDING DISABILITY

Although they are entitled to every human right, persons with disabilities often face serious discrimination based on attitudes, perceptions, misunderstandings, and lack of awareness. For example, the misconception that people with disabilities cannot be productive members of the workforce may lead employers to discriminate against job applicants who have disabilities, even if they are perfectly qualified to perform the work. Or it might mean that buildings where jobs are located are not constructed in a way that people with mobility impairments can access them.

Such limitations can affect other population groups as well. For example, in some societies attitudes toward women prohibit them from owning property or participating in public life. Members of racial or ethnic minorities are often forbidden to speak their own language or practice their religion. A person with a disability who also belongs to another group that experiences discrimination (e.g., a disabled woman who belongs to an ethnic minority) may face multiple layers of discrimination and barriers to realizing human rights.

In addition to attitudes and perception coming from external sources, each individual&3039;s attitude directly affects how he or she exercises human rights. A person who believes a disability makes her or him somehow different in respect to human rights will claim - or not claim - those rights very differently.

Destructive Attitudes and Concepts

The Medical Model of Disability:
Perhaps the most significant and widespread myth affecting human rights and disability is the idea that disability is a medical problem that needs to be solved or an illness that needs to be "cured." This notion implies that a person with a disability is somehow "broken" or "sick" and requires fixing or healing. By defining disability as the problem and medical intervention as the solution, individuals, societies, and governments avoid the responsibility of addressing the human rights obstacles that exist in the social and physical environment. Instead, they place the burden on the health profession to address the "problem" in the person with the disability.

The Charity Model of Disability:
Another major misperception is that people with disabilities are helpless and need to be cared for. It is much easier for people to offer pity and charity than to address the fear or discomfort they themselves feel when it comes to people with disabilities. It is also often easier to do something for somebody than to make sure that they have the resources to do it for themselves.

The result of both the medical and charity approach is to strip people with disabilities of the power and responsibility for taking charge of their own lives and asserting their rights on an equal basis with others.

 

Positive Attitudes and Concepts

Disability as a Natural Part of Human Diversity:
Everyone is different, whether that difference relates to color, gender, ethnicity, size, shape, or anything else. A disability is no different. It may limit a person's mobility or their ability to hear, see, taste, or smell. A psycho-social disability or intellectual disability, may affect the way people think, feel, or process information. Regardless of its characteristics, disability neither subtracts from nor adds to a person's humanity, value or rights. It is simply a feature of a person.

Reasonable Accommodation:
A person with disabilities may require a reasonable accommodation, such as a wheelchair or more time to accomplish a task. A reasonable accommodation is simply a resource or a measure designed to promote full participation and access and to empower a person to act on his or her own behalf. This approach is not the same as trying to fix the person or fix the disability (the Medical Model) or assuming that people with disabilities are incapable of acting for themselves (the Charity Model).

The Social Model of Disability:
This model focuses on eliminating the barriers created by the social and physical environment that inhibit the ability of persons with disabilities to exercise their human rights. This includes, for instance, promoting positive attitudes and perceptions, modifying the built environment, providing information in accessible formats, interacting with individuals with disabilities in appropriate ways, and making sure that laws and policies support the exercise of full participation and non-discrimination.

THE HUMAN RIGHTS APPROACH TO DISABILITY

The social model of disability, which focuses on the responsibility of governments and society to ensure access, inclusion, and participation, sets the stage for the emergence of the Human Rights Approach to Disability, which focuses on the inherent human rights of persons with disabilities. This approach:

  • Identifies persons with disabilities as rights holders and subjects of human rights law on an equal basis with all people
  • Recognizes and respects a person's disability as an element of natural human diversity, on the same basis as race or gender, and addresses the disability-specific prejudices, attitudes, and other barriers to the enjoyment of human rights
  • Places the responsibility on society and governments for ensuring that political, legal, social, and physical environments support the human rights and full inclusion and participation of people with disabilities.

The UN Office of the High Commissioner for Human Rights (OHCHR) has summarized the rights-based approach as follows:

"A human rights approach asks what are the long term or underlying reasons why a section of society is vulnerable, marginalized or experiences discrimination.

A human rights approach then provides strategies based in international human rights law and standards which address these root causes of discrimination."

In particular the OHCHR stresses the following ideas:

Empowerment: A human rights approach to disability aims to empower people with disabilities to make their own choices, advocate for themselves, and exercise control over their lives.

Enforceability and Remedies: A human rights approach to disability means that people with disabilities should be able to enforce their rights at the national and international levels.

Indivisibility: A rights-based approach to disabilities must protect both the civil and political rights as well as economic, social, and cultural rights of people with disabilities.

Participation: A human rights approach to disabilities says that people with disabilities must be consulted and participate in the process of making decisions that affect their lives.

Barriers to exercising human rights can stem from attitudes, prejudice, a practical issue, a legal obstacle, or a combination of factors. But a disability itself does not affect or limit a person's entitlement to human rights in any way. Defining persons with disabilities first and foremost as rights holders and subjects of human rights law on an equal basis with others is an extremely powerful approach to changing perceptions and attitudes, as well as providing a system for ensuring the human rights of persons with disabilities.

“Each handicap is like a hurdle in a steeplechase, and when you ride up to it, if you throw your heart over, the horse will go along, too.”

- Lawrence Bixby

 

Key Non-Binding Instruments on Disability

 

  • World Programme of Action Concerning Disabled Persons:
    The UN declared 1981 as the "International Year of Disabled Persons" (IYDP) with the theme of full equality and participation of persons with disabilities and a call for plans of action at the national, regional, and international levels. One important outcome of the IYDP was the development by the UN of the World Programme of Action Concerning Disabled Persons with the stated purpose "to promote effective measures for prevention of disability, rehabilitation and the realization of the goals of 'full participation' of disabled persons in social life and development and of equality." To provide a timeframe for governments to implement the World Programme of Action, the UN declared 1983-1992 the United Nations Decade of Disabled Persons.
  • UN Standard Rules on the Equalization of Opportunity for Persons with Disabilities:
    Many people believed that the World Programme of Action, although valuable, would not achieve the results needed to ensure that the rights of disabled persons were respected. In 1987 the UN convened a meeting to consider drafting a convention on disability rights; however, at that time there was not enough support to move ahead. In 1990, the UN decided to develop another kind of instrument that would not be international law but rather a statement of principles signifying a political and moral commitment to equalizing opportunities for disabled people. The resulting Standard Rules on the Equalization of Opportunity for Persons with Disabilities (Standard Rules), adopted in 1993, was the first international instrument to recognize that the rights of disabled persons are greatly affected by the legal, political, social, and physical environment. Although superseded by the CRPD, the Standard Rules are still an important advocacy tool for the disability community, and many of its principles served as a basis for drafting that Convention.
  • The UN Principles for the Protection of Persons with Mental Illness and the Improvement of Mental Health Care (The MI Principles):
    These principles were developed in 1991 to establish minimum standards for practice in the mental health field. The MI Principles have been used as a blueprint for the development of mental health legislation in many countries. They include some very important concepts, such as the right to live in the community.
  • Many advocates in the field of psycho-social disability believe that this instrument establishes lower standards on some issues than is reflected in other human rights law and policy. In particular, there is concern about requirements for "informed consent" for treatment of people with psycho-social disabilities. Disability advocates should look carefully at the standards in this instrument and decide for themselves whether or not it should be used as an advocacy tool for the rights of persons with psycho-social disabilities.

 “Deserve the Grace of God by helping the weak and poor, the diseased and the disabled, the distressed and the downtrodden.”

 

 Sri Sathya Sai Baba

"I discovered early that the hardest thing to overcome is not a physical disability but the mental condition which it induces. The world, I found, has a way of taking a man pretty much at his own rating. If he permits his loss to make him embarrassed and apologetic, he will draw embarrassment from others. But if he gains his own respect, the respect of those around him comes easily."

- Alexander de Seversky

“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.”
 
― Leo Buscaglia

Medical Whistleblower Advocacy Network

MEDICAL WHISTLEBLOWER ADVOCACY NETWORK

P.O. 42700 

Washington, DC 20015

MedicalWhistleblowers (at) gmail.com

CONTACT

"Never impose on others what you would not choose for yourself."  Confucius

"It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat."

Theodore Roosevelt- Excerpt from the speech "Citizenship In A Republic", delivered at the Sorbonne, in Paris, France on 23 April, 1910