A participant in community-based mental health services in São Paulo, Brazil, poses during a photography session. He and other participants live and work in the community, enjoying the same rights as other citizens. Photo ©Regis Moreira
A Question of Human Rights
by Cristina Henley
Albertina Ximenes could not have been prepared for the scene she encountered when she visited her son, a mental health patient at Brazil's Casa Ade Repouso Guararapes. Two days after taking him to the rest home for medical and psychiatric treatment, she discovered 30-year-old Damião bloodied and reeking of feces and urine, his hands tied and his face and abdomen swollen, apparently from torture or beating.
In a complaint to Brazil's Federal Public Ministry in 1999, Ximenes says she cried out desperately for the police. She claims the director of the facility told her to stop crying and to "let him die…whoever is born has to die." He then prescribed drugs for the patient, and shortly afterward, Ximenes found her son lying naked on the floor of one of the rooms. A nurse told her not to worry, that he was calming down and should be left alone. But when Ximenes returned home, there was a message waiting for her that her son had died. An autopsy report revealed the cause of death as "undetermined."
As shocking as it is, the Damião case is not an uncommon story.
Javier Vásquez, a human rights lawyer for the Pan American Health Organization (PAHO), has seen similar abuses in countries throughout Latin America and the Caribbean. "The violations are gross and systematic," he says. "In one country, I saw a woman who was in a cell for seven years without a bathroom, without ventilation, and without lighting. In another country, I found a pair of brothers who were isolated for almost eight years, completely naked, in similar living conditions."
Vásquez began investigating abuses as a law student in Panama. While working in a rehabilitation program for people with mental disabilities, he infiltrated institutions, befriending sympathetic staff and often spending the night to observe the treatment of patients. Since then, he has investigated mental hospitals in 15 countries.
Off the top of his head, he recounts the atrocities he has witnessed, but he says it is impossible to know the true extent of the violations that occur.
Photo ©Armando Waak/PAHO
"Many mental health hospitals function in remote areas...far from any monitoring by the government and far from the care and interest of the average citizen. So the violations happen in isolation."
Moreover, he says, there is a general lack of understanding about just what a "violation" is. Some think of people with mental disorders as an alien group and fail to realize that they are guaranteed the same rights as people without mental disorders.
"The fact that persons with mental illness have different behaviors and different ways of thinking can create social stigmas against them," he says. "They may be seen as aggressive and violent, and some might think they need protection from them. But they are still human beings. As such, they are treated equally before the law and enjoy the same constitutional freedoms as all citizens. Any restriction of these constitutes a serious violation."
While there are many obvious forms of mistreatment—physical abuse, filthy living quarters, improper nourishment and medication—the list of potential human rights violations is much longer than what one might imagine. Mental health patients can live in isolation for five, 10, or 15 years without ever being taken to a priest (right to religious services), a library (right to access the press), or a park (right to recreational facilities). They might never enter a voting booth (right to vote) or a courtroom (right to a fair trial) to determine if their confinement is legally justified.
Vasquez attributes many of these violations to a lack of information.
When a violation is identified, many people simply do not know what legal recourse exists to protect those with mental illnesses or where to go for help. Often, by the time there is legal intercession, the patient may have already died. At that point, the focus of an investigation changes from the immediate victim to reparations for families and to system reform.
Victor Rosario Congo waited a month in 1990 before being admitted to a hospital to receive treatment for a brutal beating that left him physically incapacitated and highly demented. He died as a result.
Congo had been an inmate in an Ecuadorian detention center when he was struck repeatedly on the head by a guard with a club. He had already shown signs of dementia, but according to the center's director, the attack and the loud barrage of questions that were fired at him exacerbated his condition and pushed him to a "high degree of insanity." Congo was left in an isolation cell naked, defecating and talking to himself.
It took two requests and a special intervention by the executive secretary of the local Diocesan Commission of Human Rights before Congo received a medical examination. Medical experts concluded that he was suffering from "incarceration psychosis" and suggested a transfer to a psychiatric facility.
After two requests, he was moved, but both hospitals where he was taken refused to admit him. When a third hospital finally agreed to admit him—a month later—he died within a few hours of malnutrition, heart failure and dehydration.
Congo's case was taken up by the local Ecumenical Commission of Human Rights, which brought the case to the Inter-American Commission on Human Rights in 1998. The commission was created by the Organization of American States (OAS) to ensure compliance by member countries with international human rights conventions, including the protection of people with mental illnesses.
Among the complaints in Congo's case was the allegation that a proper investigation of the guard who attacked him had never been launched and that if it had, the inmate might have had quicker access to the medical treatment and care that were denied him from the day of the attack.
Photo ©Armando Waak/PAHO
In its defense, government representatives argued that the request for an investigation had been filed with the wrong agency, causing a delay. The OAS commission ruled in favor of the patient's family, concluding that it is the state's obligation to conduct immediate investigations of such attacks and that neither the victims, families, nor legal agents should be left with the task of finding and exhausting domestic legal remedies on their own.
The Congo case illustrates how lack of information, funds and political support can contribute to violations against people with mental illnesses. The overarching complaint in the case was that Congo did not receive the basic medical and psychiatric care he needed to survive while in custody. Though he had been diagnosed as incapable of caring for himself, he was left in isolation—practically up to the day of his death—without anyone making sure he was eating or cleaning himself.
Officials argued that the country's socioeconomic situation prevents it from having psychiatric prisons and specially trained guards to handle inmates with mental disorders, and that the country's psychiatric hospitals do not admit prisoners because they may frighten other patients. The commission noted, however, that Ecuador offers outpatient care to inmates with other health problems, and concluded that the fact that it has no specific facilities for prisoners with mental illnesses does not exempt it from its obligation to provide them with adequate care.
The OAS commission also found the entire penitentiary system in breach of international standards of medical and psychiatric triage, which proscribe imprisonment of mentally ill people and require that they be placed in mental health facilities. If they have to be kept in prisons, it must be under the special watch of a physician and with the best care available. The commission ordered reforms in the country's penitentiary system to meet these standards, including assigning health specialists to work in prisons to identify and care for inmates who show signs of mental disorders.
"There are international treaties, such as the American Convention on Human Rights and its Additional Protocol, which have been ratified by most of the countries in the region and which clearly establish the rules that each country must follow," says Vásquez. "The problem is that, many times, there are not enough resources for the countries to enforce the rules, or governments do not make it a priority, or citizens are not active enough in raising their voices against the system."
Understanding rightsReform is badly needed, and the process must begin with ordinary citizens, says Vásquez. "When citizens see persons with mental disorders as equal, and they understand the human rights they are entitled to and the legal mechanisms to claim those rights, they have the power to identify when something is wrong and can act to stop it. That is why it is important to educate communities, families, students, journalists, artists, health workers, government officials—everyone—about the human rights of the mentally ill. Everyone can help make change if they know how."
In 1990, PAHO's Mental Health Unit and Office of Legal Affairs partnered with the Inter-American Commission on Human Rights to establish the Initiative for the Restructuring of Psychiatric Care. The initiative aimed to promote and protect the human rights of people with mental disorders. The first year's activities included a regional conference in Venezuela, which produced the Declaration of Caracas—a call for sweeping reform based on education and awareness raising about the human rights of the mentally ill. Since then, the initiative has produced guidelines for reforming mental health systems according to internationally accepted human rights norms and standards.
To support this process, PAHO has conducted research in this area and organized training workshops throughout the region in close collaboration with its local offices. With the support of the World Health Organization (WHO), the OAS commission, and other groups, workshops have been held in 15 countries. Participants include community leaders, family members, and students, as well as professionals in such fields as psychiatry, psychology, law, media, nursing, pharmacy, dentistry, occupational therapy, and government.
Vásquez says that participants typically know little—but are eager to know more—about international human rights standards and their application in hospitals and mental health facilities. He adds that even mental health and legal practitioners find they have a lot to learn in the workshops.
A major focus of the workshops is the contents of international human rights treaties and standards, including the Universal Declaration of Human Rights, the American Declaration of the Rights and Duties of Man, the International Covenant on Civil and Political Rights, and the American Convention on Human Rights and its Additional Protocol on economic, social and cultural rights. Participants learn how these can be incorporated into their national legal frameworks and mental health policies. In a 2001 workshop in Nicaragua, for example, participants drafted a document with recommendations for system reform, which included a call for designing and implementing a national mental health policy in accordance with international standards. The document was eventually submitted to Nicaragua's Ministry of Health, Supreme Court, legislature, and the media.
Photo ©Armando Waak/PAHO
PAHO experts have also helped set up formal networks for the protection and promotion of the human rights of people with mental illness.
"We start committees within the countries and work closely with them to draft mental health plans, policies and laws," says Vásquez. A key target in this process is countries' ombudsmen's offices, which investigate private citizens' complaints against the government. They operate at the local level and can follow up to ensure compliance with local laws. While many of these offices have a human rights mandate, mental health consumers are often not included in their agendas.
"The ombudsmen's offices are involved in coordinating our visits to the prisons and hospitals," says Vásquez. "But often, the staff members have never visited themselves, so we spend a lot of time training them on how important it is that they visit mental health facilities and review their compliance, seeing it for themselves."
In Costa Rica, PAHO worked with the Ombudsman Office to publicize an announcement about ending stigma and discrimination against people with mental illnesses. The office also distributed international standards on human rights to the country's public institutions and conducted its own workshop for judges and journalists.
PAHO has trained ombudsmen personnel in Argentina, Costa Rica, Ecuador, El Salvador, Honduras, Nicaragua, and Peru as well as in countries of the eastern Caribbean. Future plans include extending training for judges throughout the region.
Another area of emphasis is moving mental health services in the region out of hospitals and facilities into the community. This type of change can lead to widespread reform, Vásquez says. Placing mental health patients and personnel in areas where they are immediately visible to the community eliminates the potential for the gross violations that have been occurring in secret. It also provides more opportunities for ordinary citizens to interact with mental health patients, understand them more fully, and erase the stigmas against them. From a budgetary perspective, moving mental health services into communities also alleviates resource deficits.
"In many countries, we find there are a limited number of mental health personnel and limited funds that are dedicated to this vulnerable population," says Vásquez. "But the key is to take whatever is available and put it into the community, where its utility can be maximized."
For example, patients can receive medical and psychiatric treatment in general hospitals and live in residences, avoiding the need for costly mental health facilities. They also benefit from working and living in a community where they enjoy the same freedoms as their neighbors.
PAHO's mission is to garner support for this type of reform by showing how it can work and how to make it work, says Vásquez. To that end, PAHO organizes training workshops for members of the community who live with mental health patients at home, for patients themselves and for medical health personnel who might work as neighborhood supervisors.
"The important thing is to keep mental health community-based," says Vásquez. "When the cells disappear, when the walls are no longer there, a person with a mental disorder is in a much more positive environment. The restriction on their movement, on their liberty is lifted. They are counted as citizens and are free to exercise the civil, political, economic, social, and cultural rights they are entitled to as human beings."
Cristina Henley is an account executive who works on social marketing and health communications campaigns in the Washington,D.C.,area.