Medical Whistleblower Advocacy Network

Human Rights Defenders

Do You Know What a Dragon Looks Like?

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 




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 


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. 


So I respectfully ask the US Congress 

Do You Know What a Dragon Looks Like? 


“Obviously, because of my disability, I need assistance. But I have always tried to overcome the limitations of my condition and lead as full a life as 
possible. I have traveled the world, from the Antarctic to zero gravity.” 

Stephen Hawking