A year ago Florencia was a relatively happy and productive member of society – working as a literature teacher in Belgrano, writing for journals, travelling with friends. Now, aged 52, she spends her days in a squalid room, sleeping or pacing up and down without end. She doesn’t know when she last took her medication, nor the last time she ate.
No one knows what happened, or why it happened, but, according to her prescription, Florencia is suffering from acute psychosis. Unable to receive the treatment she requires, she is practically alone in the world; her 83-year-old father tries to keep her with him, but is overwhelmed by the responsibility, both moral and economic, and drained by her erratic behaviour.
The World Health Organisation (WHO) defines mental health as “a state of well-being in which every individual realises his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his community. The WHO estimates that by 2020, mental illness will represent the greatest cause of disability in the world.
Argentine Ministry of Health statistics indicate that mental illness is behind 36% of all disabilities, and treatment for people like Florencia is evolving in accordance with recent changes in the national law. Nonetheless, as Florencia’s work leave runs out, her medical bills grow, and her choices for treatment dwindle. As this goes to print, she is currently in a private institution, wavering between a drug-induced sleep and consciousness, unaware of what will happen to her when she is no longer able to pay her insurance premiums.
The New Law of Mental Health
An estimated 20,000 individuals (.05% of Argentina’s population) are committed in mental health institutions; on average, 80% of these people will remain hospitalised for over a year, and many will remain there for life. According to the National Anti-Discrimination Institute (INADI) more than half of these patients will remain institutionalised due to loss of social ties, poverty, social/family abandonment, and/or the lack of adequate community devices for re-insertion.
After years of countless horrors committed against mental health patients – including physical and sexual abuse, negligence, unexplained deaths, and arbitrary punishment and isolation – a group of activists came together to bring to light the true status of mental health in Argentina. Through books, films, lawsuits, and manifestations, human rights organisations, legal groups, family members – and patients themselves – worked hard to raise social and political awareness as to the plight of mental health.
And a new law was drafted: the Mental Health Law # 26.657, sanctioned in December, 2010. In keeping with world developments for the rights and wellbeing of the mentally ill, the new law prohibits “the creation of new asylums”, restricts “involuntary institutionalisation”, and requires that an interdisciplinary group, which should include a human rights representative, participate in the internment process.
The new law also demands that 10% of the overall health budget be allocated to mental health. For the year 2013, this would mean the equivalent of $1.27bn, a much needed push in the right direction for this typically money deprived sector. Financing in mental health has been earmarked for economic subsidies for community organisations, financing for entrepreneurs in the area of social solidarity, community education projects, equipping of health centre networks and services, grants for individuals during the social and labour re-insertion process, as well as training for interdisciplinary teams working on a service network based in communities.
According to INADI, underpinning the new legislation is a paradigm shift in the recognition of mental health patients as “subjects with rights” and not “welfare objects”. Among other things, this, it is hoped, will help prevent a repeat of cases such as that of Matías, whose untimely death while in medical care around the time the new law was being debated in the Senate remains a mystery two years later.
Matías, 24, was originally interned for ‘impulse control’ but spent more than three years in the Hospital Borda, the largest psychiatric hospital in Buenos Aires. After spending a weekend with his family in October 2010, he returned to El Borda, but two days later was sent to a nearby hospital to be treated for “a fit of convulsions” occurring the same day as his transferral. Doctors at the general hospital noted that the young man at the time of hospitalisation was “unconscious, cyanotic [bluish skin], and feverish”. Dermatologists examining his skin found lesions: “type B burns of the type caused by electrocution.” Matías died two weeks later as a result of “septic shock and pneumonia”. Nothing in his clinical record in El Borda, which is missing entire folios, mentions an episode of ‘convulsions’, nor describes how the burns could have been acquired, nor documents his transferral to the general hospital.
De-institutionalisation – a Rationale
On the face of it, de-institutionalisation, or the gradual replacement of asylums with “alternative treatments”, appears to be a win-win situation, where government interests coincide with those of patients and society as a whole. Experience based practice (EBP) and empirically supported treatments (EST) worldwide have proven that a community-based model of mental health attention is more efficacious than the traditional asylum-based model, and additionally signifies that institutionalisation is “unnecessary” and should only be applied in “exceptional” situations.
Patricia, who has spent half her life in and out of asylums, agrees: “Asylums are dumping grounds that families use to get rid of their crazy relatives.”
Although the Argentine law was written in accordance with WHO guidelines for mental health legislation, and addresses many of the problems inherent in a traditional asylum-based mental health system, critics say that de-institutionalisation responds to economic motivations rather than any particular interest of society for the well-being of mental patients themselves. Ever since the demand for psychiatric treatment for returning WW2 veterans exceeded the number of beds available, straining the health system to its limits, “de-institutionalisation” has been seen as a way to ease the economic burden of mental health costs.
Ideally, the new law would provide for those patients unable to pay for hospitalisation, medication, and adequate medical and psychological attention by demanding that general hospitals accept “acute” mental cases for no more than six weeks and creating mechanisms whereby community outreach programmes cover the gaps in the social re-insertion process. In practice, mental institutions have no controls in place whereby said reforms can be implemented, and – to date – no general hospitals have opened wards for acute mental patients.
And misinterpretations of the law have already led to market speculation.
Recent attempts by Buenos Aires mayor Mauricio Macri to take over El Borda’s grounds has left few doubts in the minds – disturbed or not – of those affected as to the motivations driving the project: to appropriate prime real estate for financial gain. Metropolitan Police on several occasions have invaded the property (the last time was 6th September 2012), usually in the dead of night, in spite of legal writs of protection, allegedly to install municipal offices and a civic centre there.
According to Página 12, on 1st September, Macri not only made public his intentions to evict protected workshop #19, where patients learn painting and carpentry, but also declared that he directly would look to “keep” all 14 hectares (34.5 acres), some fear to create another ‘Puerto Madero’ in the south of the city.
Alberto Sava, founder of the Borda Artists’ Front, declared: “When we speak of de-institutionalisation, we don’t mean we’re closing down this place; we mean that we’re going to turn it into a general hospital. If someone has a social, emotional, work, and housing context, prolonged stays are unnecessary; they just generate more suffering…these places are concentration camps; they violate all human rights.” Sava emphasised that law 26.657 had not yet been implemented, and noted that the reality of life in El Borda – where gas has not been supplied for over a year – is incomprehensible for most.
This ulterior motive threatens to undermine the potential benefits that de-institutionalisation can offer patients. In an absolute capitalist model, mental health systems are driven by market economics – who gets services, what kind of services they get, and their quality and quantity, is determined by wealth. Typically the wealthy have unlimited access to the best mental health services available, but the poor and working classes have little or no access to services of any kind.
Patricia, who spent most of 2010 hospitalised, now depends on her medication to get along. “Who’s going to pay for this super expensive prescription?” she asks desperately. “My insurance won’t cover it because bipolar disorder is considered chronic…I only take it when I have to, not like other people I know who don’t take it at all.” She struggles to pay rent, accepting odd jobs.
Paticia’s case also reflects a growing tendency to treat mental illness with psychotropic medications and prescription drugs, as the dominant or only form of treatment.
While the concept of “a chemical straitjacket” undoubtedly benefits some individuals, and can ease the transition of mental patients from asylum to community, the primary beneficiary of this over-reliance on drugs is the powerful pharmaceutical industry. Argentina already holds top spot as the most medicated Latin American nation; de-institutionalisation requires consistent and timely medication, including medical follow-up, creating greater chemical dependencies on pharmaceutical production, an already inelastic sector of the economy. Or as Dr. Richard Roberts, 2008 Nobel Prize winner in Medicine, puts it: “a cure-all wouldn’t be profitable.”
Meanwhile, as de-institutionalisation becomes the norm, the social problem of what to do with the glut of mental patients is being absorbed by jails. Indeed, according to Argentine Supreme Court justice, Eugenio Zaffaroni: “Psychiatry was always the gloved hand of the penal system.” Although specific data for Argentina is not available, a Human Rights Watch report from 2009 calculates that 45% of federal prisoners in the US suffer from “symptoms or recent history of mental illness”.
The stigma carried by those suffering from mental disorders can be traced back to the Middle Ages and the ‘Malleus Maleficarum’, the best-selling handbook for witch-hunting that gave rise to most of the Western world’s penal system. This book identifies mental illness – including homosexuality, age onset dementia, disorders arising from substance abuse, and anorgasmia (hysteria) – with moral lacking, or sinfulness, and recommends that sufferers should be punished.
In today’s society, dominated by the authority of the “medical model”, it is a foregone conclusion that mental illnesses are “pathologies” and the discrimination inherent in this model does not take into account the variety of economic, political, and social influences that lie behind the illnesses in question. Thus society tends to “blame the victim” – that is, hold individuals responsible for their illness.
This type of social message only reinforces prejudice surrounding mental disorders, and aggravates any re-integration process. If in fact, mental illness is like any other illness, the fear and rejection that it awakens in society is not deserved. The real problem that the new law confronts then is the social concept of the ‘crazy delinquent’ or the ‘criminal nutcase’, stigmas that Dr. Grimson, director of the Foundation for Social Prevention, is quick to note, are not proper to those “suffering from psychosis, whose egos generally have to be boosted; psychosis is a problem that occurs from the inside out; substance abuse and subsequent psychopathic behaviour is a result of what the person consumes, a problem occurring from the outside in.”
Patricia says that it’s hard to find work, because “people look at her funny.” She talks freely about what she experiences: “We’re…human beings, and we suffer – not only do we suffer from the mental illness itself, but also from the physical and emotional abandonment of our friends and relatives.”
Stop Exclusion; Dare to Care
Ironically, it is the “survivors of psychiatry” themselves, or those who suffer from mental disorders, that have achieved the greatest inroads in achieving better conditions and sustaining community support and integration movements throughout the world. Fountain House is one such programme that now has developed into a worldwide movement based on the conviction that “people with mental illness are capable of helping one another”. The movement’s first clubhouse in Latin America opened its doors in Rosario in 2007 with the goal of “aiding men and women with chronic mental disorders to recover, offering opportunities for socio-cultural inclusion and employment through a mutual support community.” Nevertheless, the movement remains small and needs more support, on both a community and a national level.
A recent Centre for Legal and Social Studies (CELS) report drew the following conclusions one year after the new law entered into force: “The participation of patients is what has forged the organisation of a group whose common objective is to create an inclusive society that is respectful of the rights of all. Strengthening their activism is the surest way to ensure the application of the law. Thus the participation of this sector of citizenship arises as one of the basic structures to enforce said law…the participation of patients and their families is essential to the law’s enforcement.”
This year, World Mental Health Day falls on 10th October: Stop exclusion. Dare to care.
La Casa del Parana and Fountain House
In 1944, Michael Obolensky, a former patient from Rockland State Hospital in New York, organised the first meeting of WANA (We Are Not Alone). The idea has since spread around the world, first as WANA transformed into Fountain House, the original Clubhouse, and then with the development of the Clubhouse model now present in 341 locations and with over 100,000 members worldwide.
Clubhouses typically combat the stigmatisation surrounding mental illness by insisting on voluntary “membership”. Membership is open to anybody over 18 with chronic mental disorders, and does not expire. Clubhouses do not offer treatment, but community and educational support during the social re-insertion process.
The first Clubhouse in Latin America recently opened: La Casa del Parana in Rosario. It is non-profit and depends on volunteer efforts as well as both public and private funding to carry out its mission.
A Society of Madmen
From 1969-71, the Hospital Esteves in Lomas de Zamora piloted an innovative programme based on the concept of ‘therapeutic communities’ and designed to empower mental patients and encourage social re-integration. Despite encouraging results (90% of interned patients were able to go home after a maximum six week stay), or perhaps because of them, the pilot programme was shut down in 1971 amid accusations of “communist conspiracy”, “sexual excesses”, and “subversive behaviour”.
The programme’s coordinator, Dr. Wilbur R. Grimson, wrote a book, ‘Sociedad de Locos’ (A Society of Madmen), recounting the experience and describing one of the first efforts to achieve “preventive psychology” in a mental institution in Argentina. Dr. Grimson and his group was able to prove that “extended hospital stays were a result of the institution, and not of the patients,” thus confirming the overriding presence of the stigma that “crazy people are different than everybody else and should be held in a position that confirms that premise.”
Today Dr. Grimson heads the Foundation of Social Prevention, primarily concerned with treatment of substance abuse.
By the year 2020, mental illness will represent the greatest cause of disability in the world
36% of all disabilities in Argentina are caused by mental illness
¼ of the world population suffers from some type of mental health problem
One person in a hundred will develop schizophrenia
In developed countries, 35%-50% of people who require mental health attention don’t receive it; in developing economies this percentage increases to 76%-85%
In Argentina, mental illness represents 16% of overall burden of disease from all causes
Argentina consumes more medications than any other nation in the region, 26% of all medications are sold without a prescription
Argentina has the highest per capita rate of practicing psychologists in the world (196 per 100,000 inhabitants)