Olga Runciman – ‘A true story filled with lies’

I wrote this piece from a place of anger and outrage and it was never intended for anyone’s eyes or ears and is therefore completely raw.

A series of circumstances resulted in Michael Rassum reading it and he said I can put music to this. The result is our spoken word ‘A true Story Filled with Lies’

Why did I write it? Because this person whom I call Peter (not her real name) died of her psychiatric drugs and despite it being a clear cut case her family and I watched how psychiatry closed around itself, protecting itself and they got away with it. For years her family have sought justice just like so many others. They never got it.

Her death was the reason that we were a group who joined together and created the organization ‘Death in Psychiatry’ an organization for those who have lost a loved one to psychiatry and to stop others suffering the same fate. Dorrit Cato Christensen who has also contributed to this campaign lost her daughter and she is also one of the founding members of the organization and is today the chair.

Psychiatry has been unable to prove that it is dealing with a biogenetic illness and, likewise, its drug treatments fall dismally short of what is considered good evidence based medicine. On the contrary the evidence especially long term, point at an increased risk of chronicity, brain damage, early death – up to 25 years shorter and, as in ‘Peter’s’ case, sudden death due to drug induced arrhythmia of the heart.

To force treat people with drugs that carry with it a risk of brain damage, death and little evidence of any long, term benefits what so ever, is an unspeakable act of institutional violence.

This piece is a true story the only thing that is changed is the name and gender. It is in three sections. “Death”, “Big Pharma, the Unholy Alliance” and finally the funeral called the “Winds of Change”.

I am today a psychiatric survivor, but this could have been me.
Or you or one of your loved ones…

Please support CRPD Absolute Prohibition of Commitment and Forced Treatment.

 

Robert Whitaker: Medical Science Argues Against Forced Treatment Too

The argument that is usually made against involuntary commitment and forced treatment is that these actions, under the authority of a state, violate a person’s basic civil rights. They deprive a person of liberty and personal autonomy, and do so in the absence of a criminal charge. The United Nations Convention on the Rights of Persons With Disabilities upholds that position by prohibiting discrimination in relation to these rights. That is a morally powerful argument, and it should stand at the center of any protest against forced treatment.

However, there is another argument, one of adjunctive value, that can be made against involuntary commitment and forced treatment. Medical science argues against forced treatment too.

The “state,” in order to justify involuntary commitment and forced treatment, will argue that such coercion is necessary to provide “medical treatment” to individuals who, because of their impaired state of mind, won’t give their consent to such treatment. The implication is that if the “psychotic” individual were of sound mind, he or she would want this treatment, and thus the state is serving as a helpful guardian. But this “medical” argument falls apart upon close examination.

First, there is evidence that psychiatric hospitalization itself—whether voluntary or involuntary– leads to an increased risk of suicide. In a 2014 study, researchers at the University of Copenhagen looked at the psychiatric care received by 2,429 individuals in the year before they committed suicide, and after matching this group of completed suicides to a control group of 50,323 people in the general population, and after making adjustments for risk factors, they concluded that the risk of dying from suicide rose as people received increasing levels of psychiatric care. Taking psychiatric medications was associated with a six-fold increased likelihood that people would kill themselves; contact with a psychiatric outpatient clinic with an eight-fold increase; visiting a psychiatric emergency room with a 28-fold increase; and admission to a psychiatric hospital a 44-fold increase.[1]

In an editorial that accompanied the article, which was published in the Journal of Social Psychiatry and Psychiatric Epidemiology, the writers—all experts in suicide research—observed that these were robust findings. The Danish study, they wrote, “demonstrated a statistically strong and dose-dependent relationship between the extent of psychiatric treatment and the probability of suicide. This relationship is stepwise, with significant increases in suicide risk occurring with increasing levels of psychiatric treatment.” This link was so strong, they concluded, that “it would seem sensible, for example, all things being equal, to regard a non-depressed person undergoing psychiatric review in the emergency department as at far greater risk [of suicide] than a person with depression, who has only ever been treated in the community.”

These researchers concluded that it is “entirely plausible that the stigma and trauma inherent in (particularly involuntary) psychiatric treatment might, in already vulnerable individuals, contribute to some suicides. We believe that it is likely that a proportion of people who suicide during or after an admission to hospital do so because of factors inherent in that hospitalization.”[2]

Second, from a medical point of view, the “therapeutic relationship” between “patient” and “doctor” is understood to be an important factor to a “good outcome,” and forced treatment regularly leads to a breakdown in that relationship. The personal accounts of people who have been forcibly treated regularly compare it to torture, rape, and so forth. Moreover, these accounts cannot be dismissed as the writings of people who are “impaired” in their thinking, either at the time or later; such personal accounts often reveal an extraordinary level of detail and clarity.

Third, forced treatment regularly involves injections of an antipsychotic, and such initial treatment is regularly a precursor to long-term treatment with such drugs (and often in a coercive manner). However, there is now substantial evidence that such drug treatment over the long term does harm. For instance:

  • There is evidence that the drugs shrink brain volumes, with this shrinkage associated with an increase in negative symptoms, functional impairment, and cognitive decline.[3]
  • The drugs induce tardive dyskinesia in a significant percentage of patients, which reflects permanent damage having been done to the basal ganglia.
  • Martin Harrow, in his longitudinal study of psychotic patients, found that medicated patients fared worse over the long-term on every domain of functioning. The medicated patients were eight times less likely to be in recovery at the end of 15 years than those off the medication.[4]

This is simply a quick review of the medical case that can be made against forced treatment. But even this cursory review tells of treatment that increases the risk of suicide, can prove devastating to the “therapeutic relationship,” and may set a person onto a long-term course of medication use that has been found to be associated with a variety of harms and poor outcomes. As such, the argument that involuntary commitment and forced treatment are in the best “medical” interest of the “impaired” person falls apart when viewed through this scientific lens, and once it does, involuntary commitment and forced treatment can be clearly seen for what they are.

They are not a means for providing necessary “medical help” to an individual. They are an assertion of state authority and power over an individual, and that assertion of authority violates the person’s fundamental civil rights. Any societal discussion of involuntary commitment and forced treatment needs to focus on that issue, and not be distracted by the “medically helpful” claim.

 

[1] C. Hjorthøj, Risk of suicide according to level of psychiatric treatment—a nationwide nested case control study. Soc Psychiatry Psychiatr Epidemiol (2014) 49: 1357-65.

[2] M. Large. Disturbing findings about the risk of suicide and psychiatric hospitals. Soc Psychiatry Psychiatry Epidemiol (2014) 49:1353-55.

[3] J. Radua, “Multimodal meta-analysis of structural and functional changes in first 
episode psychosis and the effects of antipsychotic medications,” Neuroscience and Biobehavioral Review 36 (2012): 2325–33.

[4] M. Harrow. “Factors involved in outcome and recovery in schizophrenia patients not on antipsychotics medications.” J Nerv Ment Dis (2007) 195: 407-414.

 

 

In Italy, we don’t have a law against torture, by Erveda Sansi

 

contro psicofarmaci_col_rid

Drawing by Vincenzo Iannuzzi

 In Italy, the situation in the psychiatric field, with almost no exception, has worsened from the period of questioning psychiatric institution, in the beginning of the sixties. Then, Italy has been at the forefront of the closure of mental hospitals. Not only Giorgio Antonucci, Franco Basaglia and many professionals, but also a good part of the common people, realized that psychiatric hospitals were not places of care. Civil society, then, was sensitive to the issue of smash-down asylum culture. Publications appeared, there was an open debate, workers and students organized themselves and entered in asylums to see the conditions in which their fellow citizens were locked up. They protested and denounced the deplorable conditions the internees were forced to live in.

However, since several years, we observe a re-institutionalisation process and, at the same time, in some Italian hospital’s psychiatric wards happened many deplorable facts, due to forced treatment, institutionalization and forced restraint. Some of these facts have become infamous after that committees and relatives have asked for justice, as in the case of the well liked teacher Francesco Mastrogiovanni, 58 years old, that was debated also on national television channels. Franco Mastrogiovanni, after a forced psychiatric treatment the 4th August 2009, (because of a road traffic offense: circulation, at night, on a street closed to traffic), has been heavily sedated, tied to the bed of Vallo della Lucania’s hospital psychiatric ward, and left to die after four days of abandonment. During the 80 hours hospitalization he was nourished only with saline solutions; he was tied hands and feet to the bed, in such a position that his respiratory functions where compromised, and he was sedated with high doses of psychiatric drugs, without supervision from the staff. At wrists and ankles there are 4 cm wide grazes. A hidden camera recorded everything; the video is of public domain. At the trial the responsible physicians were found guilty and sentenced to 3 and 4 years detention, that, with the mitigating clauses, they won’t have to serve. The 12 nurses were acquitted because “they obeyed an order”. The Committee truth and justice for Francesco Mastrogiovanni, asks for truth and justice. Watch also the film 87 ore (87 hours), gli ultimi giorni di Francesco Mastrogiovanni (Francesco Mastrogiovanni’s the last days) by Costanza Quadriglio.

 

In Italy some deaths due to forced hospitalization and/or prolonged or short-time use of mechanical and chemical restraint have been reported by the press, television and network (this mean that there are a lot of other such “incidents”, we don’t know):

27 October 2005: Riccardo Rasman dies during a coercive treatment by the policemen, for a hospitalization against his will, in a psychiatric ward in Trieste.

21 June 2006: Giseppe Casu, guilty of having wanted to pursue his peddler job in the village square, dies in a psychiatric ward in the hospital “Santissima Trinità” of Cagliari, as a consequence of a thromboembolism, after a forced hospitalization and having been heavily sedated. He was tied hands and feet to the bed, for 7 days and was sedated with high doses of psychiatric drugs against his will.

28 August 2006: A.S., the 17th of August 2006 is admitted to the psychiatric ward in Palermo, for medical investigations. A.S. died after 2 days coma, the 28th of August, probably for excessive doses of psychiatric drugs.

26 May 2007: Edmond Idehen a 38 years old Nigerian man, went voluntarily into the psychiatric ward of Bologna’s hospital “Istituto Psichiatrico Ottonello – Ospedale Maggiore Bologna”. As he tried to leave the hospital, because he did not feel cared, the doctors forced him to stay, with the help of policemen. Edmond Idehen died as a consequence of a hearth attack while nurses and policemen held him down. He was also strongly sedated with psychiatric drugs.

12 June 2006: Roberto Melino, 24 years old, dies for a hearth attack; he entered voluntarily the psychiatric ward of Empoli’s “San Giuseppe” hospital. As he tried to leave the hospital, he was forced to stay by the doctors, and obliged to take high doses of psychiatric drugs, in spite of his evident and serious breath difficulties.

15 June 2008: Giuseppe Uva, 43 years old, was brought inside a police station, because he was driving in state of high alcoholic level. There he was subjected to ill-treatments. After 3 hours he was forced to an obligatory hospitalization in the Varese’s “Circolo” hospital and was forced to take psychiatric drugs. He died because of the stress provoked by the mix of alcohol and psychiatric drugs.

30 August 2010: Lauretana La Coca, 32 years old, entered voluntarily in Termini Imerese’s “Salvatore Cimino” hospital. After 10 days of hospitalization her condition got worse, till she got into a comatose state and died.

Giuseppe D.: A man, more than 70 years old, was interned in Reggio Emilia’s psychiatric prison. His problem was that the neighbour’s daughter is a psychiatrist. His lawyer took a legal action to the European Court of human Rights, but until now there has been no answer, so the Pisa’s student group “Collettivo Antipsichiatrico Artaud”, together with “Telefono viola” from Milan, decided to release the documentation relating to this case in Internet, according with Giuseppe D.’s will, his lawyer, and his relatives.

2 April 2010: Eric Beamont, 37 years old, the 2 April 2010 was hospitalized in Lamezia. After 2 days he entered coma, so the doctors transferred him to the Catanzaro’s “Pugliese – Ciaccio” hospital, where he died. There is the suspect that the death of Eric was caused from a high dose of benzodiazepine. Diagnosis was: subarachnoid hemorrhage[1]

28 May 2015 Massimiliano Malzone died during a forced treatment.

11 July 2015 Amedeo Testarmata died during a forced treatment.

29 July 2015 Mauro Guerra died during a forced treatment.

5 August 2015 Andrea Soldi died during a forced treatment…

Unfortunately in this article we have not described isolated occurrences, but an emblematic situation of violation of human rights in the Italian psychiatric institutions.

These are just some of the “incidents” that came to the limelight, but many more of them are not known when they happen, because, for example, people who live in loneliness are involved, or people whose relatives have given their consent, or simply when people want to get rid of a person perceived as annoying. We The Mad Hatter Association, constantly of forced psychiatric treatments, during which treated people suffer heavy damages. Forced treatments are often made on request of relatives, when patients refuse to take any longer the psychiatric drugs, or when their behaviour is perceived as disturbing. A friend of us (I.M.) tried to escape, but he was chased and filled with drugs; shortly after he was found dead at the bottom of a ravine. He was 40 years old. Another friend (A.S.) was walking on a path between fields and was stopped by police, because he was known as a “mentally ill” person. Then they called the psychiatrist on duty and told him: “He was walking near the railway and could possibly have in mind to commit suicide”; so they locked him up. I know this person, who often walks in the fields, where, however, it’s easy to be located near the railway, because of the constitution of the territory. He had never the intention of committing suicide. Another acquaintance of us died, throwing himself under a train, terrified by the fact that his mother, according to the psychiatrist, would refer to forced psychiatric treatment for him. Another one (U.S.) has suffered of heavy harassment, after having reported his superior’s embezzlement, noticed during his duties as a municipal technician. He was subjected to forced psychiatric treatment, kidnapped by police in riot gear. While he was sleeping, his door was smashed down, and he was thrown on the ground face down and handcuffed. He says that at least they could have tried to open the door, which was not locked. Now he is terrified and he even fears the dark; he is forced to take psychiatric drugs.

We can not think of de-institutionalization before we have dismissed the rules that allow forced psychiatric treatment, that allow to hold a person against his will, without having committed any crime, without the right to an equitable process, based on the alleged dangerousness and only because this person was diagnosed with a mental illness.

The so called “Basaglia law” the law nr. 180 from 13.5.1978, then joined and actually regulated by Law 833/1978 articles 33, 34, 35, 64, establishes the “Accertamenti e Trattamenti sanitari volontari e obbligatori” (“Forced health verifications and treatments”). In 1978 the law nr. 180 imposed the asylums’ closure, and the elimination of dangerousness or/and public scandal as criterion for forced treatment. But in the most Italian province, asylums didn’t close. So it was necessary to make another law, (because these asylums were too expensive), the law n. 724 from 23.12.1994, art. 3 paragraph 5, which dispose that these asylums had to be closed within the 31.12.1996; again disregarded, differed until the end of 1999. In 1996 the asylum inmates in Italy were 11.516 in 62 public asylums and 4.752 in private asylums.

According to this art. 180 law, forced treatment and included forced hospitalization, are possible if there are the following conditions: 1) a person “suffering mental illness” requires urgent medical treatment; 2) refuse the treatment; 3) it’s not possible to take adequate measures outside the hospitals. Forced treatments has a maximum duration of seven days, but can be renewed if necessary and then extended if it persists for a reasoned clinical need (it’s not an exception that the duration is extended for months and years). For forced treatments and the consequently limitation of personal freedom, there must be a request signed by two physicians, an administrative validation from the Mayor is required, followed by the validation of a judicial review by the Tutelary Judge.

Legislation of forced psychiatric treatment provides ample scope for arbitrariness and it is in strong contrast to the human rights regulations, that aim at preserving even people with disabilities from inhuman and degrading treatments. For those who commit a crime, it is expected that the judicial authority, within certain specific procedural rules, sanctions or imposes restrictive measures. We constantly deal with innocent people in forced psychiatric treatment, who can no longer find a way out of the psychiatric institution.

“I have to confess”, said a psychiatrist, “to have a person completely in my power, made me feel a kind of sadistic shiver”.

In Italy the CRPD was ratified in 2009, but just at now we have not a law against torture, torture is not a crime, torture is not forbidden in Italy. So, those who torture does not violate the law. In the meantime a lot of intermediate psychiatric institutions (also called little asylums) were built. They are public or private and reimbursed from the State. A very great business is behind. Some other examples: Lazio Region President Polverini’s decree on Lazio hospital system: the number of beds in Psychiatric Institutions raise from 369 up to 629; more 70%. 50 beds for the public structure and 210 for the private structure trigger the chronicization circuit.

260 beds = 90.000 life days subtracted to the people at the cost of 10.000.000 €.

Didn’t the Basaglia Law foresee the closing up of madhouses?

  • Professor Antonucci, what is, to date, the status of implementation of the law 180?

– Apart from some single exceptional case, what proposed Franco Basaglia is not realized, but it continues a job that Basaglia obviously would not approve: authoritarian interventions, taking people by force and bring it in psychiatric clinics, which are the continuation of the asylum. The asylum was established by the authoritarian intervention: I take a person against his will, then I submit her to a series of forced interventions, which are the essence of the mental hospital”. (http://www.psicoterapia.it)

The deplorable situation of the six Forensic Psychiatric Hospitals recently became more visible, after surprise-inspections of a parliamentary committee. The videos of the visits, showed by the national television, and the press releases can be found on the web. A parliamentary report had already been made in June 2010, but the photographs show a situation that until now has not yet changed. People held for decades for minor offenses, whose penalty would have expired long time since, if not repeatedly and automatically renewed.

Here below we report some data extracted from the text of the parliamentary relation on the June 2010 inspection of the 6 Italian psychiatric prisons (forensic institutions) still active (Senator Ignazio Marino, physician ,was Chair of the Investigative Committee on the National Health Care System). After the 1978 “Basaglia law”, madhouses had to be closed, but the 6 psychiatric prisons mentioned above keep doing the same job. Senator Marino was also concerned about the increasing of electroshock (from 9 institutions allowed to give electroshock before 2008, now we have more than 90 psychiatric institutions who dispense ECT).

The regulations and logics that manage these psychiatric prisons (forensic institutions) (in Italian OPG-Ospedale Psichiatrico Giudiziario), are the same inherited by the fascist Rocco Code (1934). 40 % of the 1500 actual convicted should already have been released, for detention terms expired, but they see their penalty end terms deferred in order of their supposed social dangerousness.

Nine people each cell, dirty bathrooms and bed sheets; dirty nurses’ gowns as well. In Barcellona Pozzo di Gotto (Messina), 329 convicted are overcrowded in cells built in 1914. Dirt everywhere. One patient was found naked, tied up to his bed, with a haematoma on his head. Aversa, built in 1898. 320 people locked up six by cell, in inhuman conditions.

NAS (Antisofistication and health nucleus of Carabinieri (Police)) reported and denounced all this to the Public Prosecutor’s Office, but this office is often made by the same persons that sentence patients to life.

In the Secondigliano OPG, the psychiatric prison is interior to the jail. Here stays since 25 years a patient who was sentenced two years. Burns and black eyes are not reported on the clinical diary. Feet and hands go gangrenous.

In Montelupo Fiorentino OPG they are 170 in a very scruffy building. In Reggio Emilia OPG they are 274 where they should be 132. 3 showers serve 158 patients. One is tied up to his bed since 5 days for disciplinary reasons. 3 in 9 meters square. “The OPG (psychiatric prison) are one of the “silence zones”, explains Alberto, of the Pisa Antipsychiatric Collective dedicated to Antonin Artaud, “and they show the political use of psychiatry. The consume of psychiatric drugs is more and more pushed, the electroshock comes back “in fashion”, perhaps to “heal post partum depression”. And a law lies in ambush in order to bring the forced hospitalization terms from 7 to 30 days”. After the scandal came to light, on 17 January 2012 the Senate Judiciary Committee unanimously approved the definitive closure of the OPG by 31 March 2013. The closure was extended until March 31, 2015. After the closure of the facilities in 2015, according to Law Decree n. 211/2011, converted into Law no. 9/2012, have been replaced by residences for Execution of Security Measures (R.E.M.S.). We have to closedown the Forensic Psychiatric Hospitals, instead of changing the name of them. If we don’t shut dawn these places once and for all, we cannot talk about de-institutionalization. Close them not in order to transfer their users to other psychiatric institutions, but to give these people a life dignity.

A research (source: British Medical Journal) conducted in 6 European countries (Italy, Spain, England, Netherlands, Sweden, Germany), that have closed asylums in the 70s, saw that between 1990 and 2003 an increase in the number of beds in forensic psychiatric hospitals, in psychiatric wards, in so-called safe houses. Supported housing is seen as an alternatives to asylums, as a sign of de-institutionalization, but they are rather a form of institutionalization. Also forced treatments are increasing. It is not clear the reason why the number of beds in Forensic Psychiatric Hospital increased, since there is no correlation between crimes like homicides and de-institutionalized persons.

It would be important to spread the awareness that forced treatments, like the restraint is an anti-therapeutic act, that makes cures more difficult, rather than to facilitate them. Physical restraint is not exercised only in the field of psychiatry. The areas of operation where should be discussed the problem of legitimacy, usefulness and appropriateness of physical restraint, do not consist only in hospitals, but also in nursing homes for the elderly, therapeutic communities for drug addicts and nursing homes for people with disabilities related to congenital or early acquired disabilities. An improvement in psychiatric nursing practice, characterized by the renunciation of physical restraint, would be a strong signal in order to spot out the problem also in other operating environments, urging those who work in this field to act with similar treatment practices, rather than restrictive ones.

Referring to the psychiatric drugs there are rules of the Convention on Human Rights, which require user’s fully informed consent, before administering, even if he’s disabled. Most psychiatric drugs are prescribed for a long time, sometimes for life, without informing the user on their effects, and without any help in the resolution of his real and existential problems. Psychiatric drugs can cause neurological diseases, that sometimes become irreversible. Akathisia, dyskinesia, are very unpleasant effects and can throw a person in despair. Often the user is encouraged to continue taking the drugs even when he asks to withdraw them, and it is almost impossible to find professionals who help and give directions for withdrawal. Peter Breggin, a psychiatrist, working with institutions as WHO (World Health Organisation) and FDA (Food and Drug Administration), wrote hundreds of pages on the harmful effects of psychiatric drugs. Peter Lehmann, who tested the effects of drugs on himself during his hospitalization in a psychiatric clinic, has published and continues to publish the results of his research for which he uses pharmaceutical and medical literature. The effect of psychiatric drugs is known, but the billion-dollar business behind it is too big to lose it. Peter Lehmann is the first survivor of psychiatry to be awarded with the honorary degree, conferred him by the clinical psychology faculty of the Aristotele’s University of Thessaloniki, for his work as researcher and activist in the field of mental health.

A person who starts to take drugs, in most cases will be induced to take them for life, because they create addiction problems. The psychiatric user develops a very strong dependence toward the psychiatric service too. For the psychiatrists, lack of compliance is in fact intended in it self an aggravation of the disease. Then the conditioning that takes place, goes in the direction of dependence from psychiatric services, of becoming “childish” and “chronic patient”.

Although in almost all European countries asylums and psychiatric hospitals have been eliminated or substantially reduced, this does not mean that in the new post-asylum structures, asylum-dispositifs have been eliminated. People are, with few exceptions, completely sedated by psychiatric drugs, even though apparently there are implemented programs such as art therapy. The intake of psychiatric drugs is induced also in order to make the user unconscious.

Erwin Redig, a German psychiatric survivor, says: “There are people putting us under pressure to force us to take them (psychiatric drugs). If we do not take them, our changes embarrass them. If this is our case, we must make clear to ourselves that we are swallowing drugs for other people’s welfare, because they find us unpleasant if we do not”.

“The dispositif of discomfort-complex, that operates in a small residence, acts more broadly in the society”. Neuroleptic drugs affect thinking, block the flow of thoughts, and make people flatten. I relate the words of a healthcare professional: “As soon as psychiatric drugs are given to people, they literally get extinguished. To what extend is it fair to cancel the person?” Although in the European countries, the asylum psychiatry and the psychiatric hospitalization of users have given way to communities, the psychiatric institution culture has not changed. The patterns of asylum residentiality are still active. But most of all it is still alive an asylum mentality, therefore it is important for everyone to be aware how much everybody’s mentality is crucial in creating or not creating devices that belong to psychiatric institutions; operating devices that constitute a widespread operating module. “Residential Intermediate Structures”, foreseen in Italy by the 1983 law, should have had the provisional nature as their specificity; therefore they should not constitute either a definite admission or a final place for forced hospitalization; they should have been  transitional housing, that could break prejudice and exclusion logics. In March 1999, by a special decree, to the Italian Regions was imposed the definitive closure of the asylums, under threat of strong economic sanctions, because despite the birth, on paper, of the new “local services”, mental hospitals were still crowded with patients.

Named by the derogatory title of “asylum residuals”, for these people that nobody wanted, residential structures accounted for an illusion of freedom; they founded themselves to be again in a mental institution. “Many patients”, writes one of them in an autobiography, “have never been so well in terms of comfort, but nevertheless they are in a state of fearful desolation”.

An induced need of security, the defence from a potentially dangerous mind sick person that at any time, during an outbreak, could commit heinous actions against others or against himself; shortly, on the basis of this need and of this false scientific fundamentals, we build the myth of the need of post-asylums psychiatric institutions. If we don’t get reed of the psychiatric prejudice, the “mental health” institution remains. There are many alternatives pursued by individuals, associations or institutions, but they are deliberately ignored. The responsibility for solving the problems of institutionalization, is not up only to psychiatrists or to mental health professionals, but to the whole civil society. Everybody contributes to the asylum mentality. Users as well, who have internalized the psychiatric diagnosis and can no longer live without it.

Mary Nettle, chairman of Enusp until 2010, expects an increasing involvement of users and survivors of psychiatry in researches about psychiatry; while they often are excluded or not paid on the pretext that they are not professionals.

Although many examples exist that  prove that you can accompany a person in troubles out of his problems, through dialogue and support in the resolution of the objective and material difficulties, and helping him to get awareness of his own rights, these experiments and their positive results continue to be deliberately ignored.

 

“All for the Best of the Patient” – Dorrit Cato Christensen

http://www.madinamerica.com/2016/03/all-for-the-best-of-the-patient/

 

I am sharing my story in support of the CRPD campaign: Absolute Prohibition of Involuntary Commitment and Forced Treatment. This campaign is of utmost importance. Treatment and commitment carried out by force is torture, and must be abolished immediately. For psychiatric ‘help’ to happen by force is a paradox and makes absolutely no sense. It can destroy people’s personality and self-confidence. It can lead, in the long run, to physical and psychological disability – and unfortunately, as I know only too well, it can also result in sudden death.

I have been in very close contact with the Danish psychiatric treatment system. My dear daughter Luise got caught in this ‘helping system’ by mistake, but she didn’t make it out alive. I’m sad to say I later discovered that the way Luise was treated was more the rule than the exception. After writing a book about Luise and the psychiatric system, Dear Luise: A story of power and powerlessness in Denmark’s psychiatric care system, people from all corners of the world contacted me to say that Luise’s story could have been their own or their loved one’s story.

As a leader of the Danish association Dead in Psychiatric Care, I am constantly in contact with desperate people who have been committed or who have experienced some kind of forced treatment. They all talk about the tremendous amount of psychotropics they are forced to take. They feel powerless when they complain about horrible side effects and are told in response that the disease has developed and the dose has to be increased. I hear about the smug certainty of some mental health professionals, both doctors and caregivers, and the concomitant dehumanization of their patients through indifference, harassment, coercion and the use of force. Through my experience with my dear Luise, I saw this cold and dangerous treatment world.

Luise died in 2005 when her body and mind could not tolerate the inhumane treatment anymore. After her death, I got access to the hospital records. Reading Luise’s 600-page chart was a wretched experience. It presents an impersonal diagnosis, with signs of coercion, both direct and indirect, permeating the stack of chart notes. Luise wanted me to help her, but the psychiatrists didn’t want to hear my opinion. They believed that they knew better. So I watched powerlessly as Luise deteriorated both physically and psychologically. I witnessed arrogance and dishonesty, repeated misdiagnoses, professional collusion, missing official records, and falsified hospital charts.

Luise started down this path in 1992 at the age of 18. She was supposed to have a psychiatric examination without medication, however, she was heavily medicated from the very minute she set foot in the hospital. After eight days she was close to dying from medication poisoning. That was in August, 1992. In October of 1992, she was still deeply marked by the poisoning. I have no doubt that she suffered brain damage from this. Instead of treating this injury, the psychiatrists wanted to give her more medication.

Luise said no. She argued that the psychotropics had made her very ill, which was true. The psychiatrists interpreted her arguments as a sign of her illness. Shortly after that, the mandated medication began – administered by a syringe – along with the periodic use of belt restraints.

She fought for two months against the terrible drugs. The staff always won this battle, of course. They used manpower, the belt, and the syringe.

At a certain point, Luise gave up fighting. She was broken. My heart bleeds when I read the chart from November 11, 1992. Two and a half months after she first contacted the psychiatric ward for help, her chart reads, “Today the patient offers no physical resistance but is anxious about being medicated and holds hands (the psychiatrists), and afterward, she is somewhat tearful.”

After reading the chart notes, I realize that coercion, both overt and covert, plays a much greater role in treatment than I had ever imagined.

Initially, Luise fought back, which resulted in long-term coercive measures. I can see that eventually just the threat of forcible measures was enough to make Luise give in. It’s the same story I hear from many of the people who contact me. At a certain point, everybody gives up on fighting back.

July 14th, 2005, around four p.m., was the last time Luise experienced this act of cruelty. She was involuntarily committed to a closed psychiatric ward. She had a psychotropic injected. That was on top of the four other antipsychotics she was already on. On the 15th, during the night, she was walking around as usual (akathisia). A bump was heard. At 5 a.m. Luise was declared dead. The doctor’s attempt at resuscitation was in vain. My Luise was gone forever.

The hospital chart, written not many hours before she died: “The patient was persuaded today to take prolonged-release medicine.” Then a few words about the dose and about how she was feeling well and could be moved to an open ward the next day.

Luise did not want me visiting her, that afternoon of July 14. This was unusual, so I called the ward and was told that she was doing fine and she just did not want to see me. I asked if there had been a change in her medication ― I dreaded the injection the doctor had talked about, which I said would be Luise’s death. The woman on the telephone answered that, for the best of Luise, they had decided to inform me about any medication changes only once a week, so I could find out about this the following Thursday. That’s when I really got scared. Just a few words in the chart about such an important decision as giving a new drug by way of depot injection.

Medical law requires that a patient’s chart must record what information the patient has received about a new product, and what the patient has articulated about it. Nothing was noted in her chart. No informed consent. Luise would have done anything to avoid the syringe. So the sentence “The patient was persuaded today to take prolonged-release medicine” is ominous. I’m sure she fought against getting this injection, as she had earlier been about to die from injection with psychotropics.

The autopsy also revealed marks around her body, which the coroner could not explain. I have no doubt that these marks stem from the staff holding Luise down by force when she fought against getting the drug by syringe ― the injection she died from, eight to twelve hours later.

Mental health problems are not a deadly disease. Yet many people, far too many people, still die in psychiatric care. They die because they are treated with far too high doses of psychotropics, often given against their will and by force. Luise’s tragedy is far from unique in Denmark ― or indeed any other ‘advanced’ industrialized country.

After Luise’s death, I sent a complaint to the National Agency for Patient Rights and Complaints, and to The Patient Insurance Association. My complaint’s headline was “Death from drug poisoning.” I named the four different drugs she had been on, which all together was a huge cocktail.

According to these agencies, Luise received the highest standard of specialist treatment. They wrote:

The antipsychotic medication treatment has complied with the best professional standards. That the outcome has not been satisfactory is due to the nature of the condition and the circumstances that the profession’s knowledge and treatment options are limited.

As stated, I believe that the risk inherent in the medication treatment must be weighed against the sufferings Luise H.C. would have undergone without treatment.

It is incomprehensible that Luise’s treatment was judged up to standard, when in fact they administered psychoactive pharmaceuticals at three times the highest recommended dose. There was no informed consent of this polypharmacy, and nothing written in the hospital records about her treatment in the last days of Luise’s life.

According to the UN Convention, everybody should be equal under the law. So why is this equality not carried out in practice? And why is nobody held responsible when the law is violated? Will we accept a society where far too many people die from an illness that is not deadly? Can we accept a society where forced treatment is often the cause of severe disability?

My answer is NO. Please, STOP forced treatment. Why on earth are psychiatrists so keen on keeping up such dangerous and degrading treatment? I want to tell them: Please get down from your ivory tower. Down to the real world, with real people, and stop saying that this kind of treatment is “for the best of the patient.”

Dorrit Cato ChristensenDorrit Cato Christensen is an author, lecturer and chairman of the Danish association Dead in Psychiatric Care. She devoted her life to helping people who are caught in the psychiatric system after her daughter’s fatal contact with the Danish mental health system. She has chronicled her daughter’s story in her talks and in her book  “Dear Luise: A story of power and powerlessness in Denmark’s psychiatric care system”

Workfare coercion in UK – Anne-Laure Donskoy

Workfare coercion in the UK: an assault on persons with disabilities and their human rights

Anne-Laure Donskoy_Survivor researcher, UK

12067142_10153490835343527_664282852_n

While there is a lot of focus on coercion organised and implemented in psychiatry, less attention is being paid to state engineered welfare measures based on libertarian paternalism1, which have coercive practices at their core. Among them are policies that strongly support behavioural change using positive psychology and cognitive behavioural therapy. Freidli and Stearn (2015)2 call this “psychocompulsion”. These policies and measures are increasingly used to ambush and coerce persons with disabilities and the long term sick into adopting new ways of being and living conditions under the constant threat of sanctions and which have driven many to attempt to their lives. This paper builds on the work of Friedli and Stearn3 as an attempt to highlight current coercive welfare policies, including forcing ‘therapy’ on individuals, as human rights violation of the CRPD.

 

Background: Psychocompulsion as state sponsored human rights violations

Psychocompulsion, the use of psychological strategies to “nudge” individuals to make “life changes” that fit a political ideology or programme, is not entirely new to the UK. Already in the 1970s, some long term job claimants would be sent for a medical examination, on the premise that if people were not physically ill then they should be able to find and take up work, any work. This had all the flavours of Victorian paternalism written all over it. The ‘mentally disordered’ and the ‘mentally handicapped’ experienced a particular brand of paternalism, hidden away from society and from consciousness in specialist homes and services, often suffering physical and mental abuse or used in rehabilitation work with little or no protection.

Today, psychocompulsion in the UK has been promoted by the Behavioural Insights Team (nicknamed the “Nudge Unit”), now in private hands as a social purpose company but still working closely with the Cabinet Office4, thereby guaranteeing prime influence on policy making. It is clear that psychocompulsion is being used to lock individuals, including the long term unemployed, the sick and persons with disabilities, into back-to-work schemes as a conditionality of welfare. In recent months and weeks, voices of dissent have arisen mostly from social movements, denouncing the use of coercion which put people’s lives at risk5.

As Friedli and Stearn’s paper show, this finger wagging attitude has taken on a far more sinister slant.

First, it turns on its head the idea that unemployment is the product of a failing economy by strongly suggesting that it is a state of mind, worse still a ‘mental illness’ that can be corrected by changing the psychology of claimants, thus placing the onus of responsibility for success, for betterment, for choice etc. on the individuals themselves. This totally ignores issues of social (in-)justice.

Second, it widens the scope by netting in the most vulnerable people in society, specifically the long term sick and those with disabilities, including psychosocial disabilities. This strategy narrowly avoids attracting full-on accusations of discrimination by putting these individuals on par with the long term unemployed and by stressing ad nauseam that the policy is about helping people which should be achieved through (any type of paid) employment. Paid employment becomes the embodiment and the “pinnacle of human experience”.6

Third, the underlying premise that ‘work is good for you’ ignores those dissenting voices which argue that without strong provisos (taking into account the complexity of individual circumstances, choice, timeliness, appropriateness as much as the quality of support and work on offer) the argument is both unhelpful and counterproductive7, and can have devastating consequences for those concerned.

Finally, the stance of the policy totally fits within the libertarian paternalism agenda which moves away from collective to total individual (libertarian) responsibility, slowly realising Ayn Rand’s vision for a permanently productive (and permanently disposable/replaceable) workforce serving an elite. In this scheme, all coercive strategies acquire a legitimacy that the psychiatric survivor movement rejects.

 

Being ill or disabled, and on welfare benefits: state coercion and the CRPD

The Welfare Reform Act 2012 introduced a wide range of reforms to the benefits and tax credits system. The stated aim was to reduce the financial burden of the cost of welfare. This is being achieved by introducing ever drastic and punitive policies under the guises of a responsibilisation agenda, underpinned with an intense authoritarian ideology not seen or experienced since Victorian times. The Tory manifesto of the 2015 general elections claimed it aimed to help people with mental health issues back in to work. The reality is very different and people with mental health issues clearly face discriminations which other groups do not.

 

Article 4: The rights and freedoms of persons with disabilities are violated under the social security scrutiny regime:

When people with mental health issues are on welfare benefits, they find themselves the object of intense, intrusive and inappropriate scrutiny by the system, notably through the Work Capability Assessment (WCA) which has consistently failed these claimants as it is totally unsuited to their singular predicaments and experiences. As a result, more and more people are placed on the Work Related Activity Group of the Employment and Support Allowance which comes with strict conditionalities. Also affected are those under the new Universal Credit (UC) system which is being rolled out for all benefits claimants which places yet another layer of scrutiny on individuals, possibly more so those in work.

 

Article 1-5: Discrimination

A judicial review in 2013 found that the WCA process actively discriminates against people with mental health issues. Since then very little has been done to change the process and the status quo remains.

The Centre for Welfare reform, in its recent report A Fair Society?, also shows that persons with disabilities are targeted the most despite the fact that they have the greatest and often most complex needs.

12674235_10153490835108527_56659396_n

 

Article 10: Right to life: “States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others”.

A poll of over 1,000 GPs commissioned by Rethink Mental Illness in 2015, found that over 20% have patients who have felt suicidal due to the WCA8.

In a report sent to the Department for Work and Pensions (DWP), the senior coroner for inner north London, Mary Hassell, said “the trigger” for the suicide was the man being found fit for work by the department”9.

[A Freedom of Information request has] revealed that the Department for Work and Pensions (DWP) has investigated decisions, via peer reviews, about the welfare payments of 60 claimants following their deaths. A peer review, according to the DWP guidance for employees, must be undertaken when suicide is associated with DWP activity to ensure that any DWP action or involvement with the person was appropriate and procedurally correct.10

 

Article 13: Access to justice: 13.1: “States Parties shall ensure effective access to justice for persons with disabilities on an equal basis with others, including through the provision of procedural and age-appropriate accommodations, in order to facilitate their effective role as direct and indirect participants, including as witnesses, in all legal proceedings, including at investigative and other preliminary stages.”

Benefit claimants who wish to appeal a decision need access to justice. This represents an expense they can ill afford (if at all) therefore need access to legal aid. However, the Ministry of Justice has removed welfare benefits matters from the scope of legal aid funding, thereby denying access to justice and discriminating against the most vulnerable and poorest, among whom people with mental health issues:

In order to challenge a decision of a First-tier Tribunal (FtT) the appellant needs to identify an error of law in the FtT’s decision and then request permission to appeal to the Upper Tribunal (UT). The process of appealing on a point of law to the UT has two stages, but, for the reasons set out below, the legal aid contract only covers the second stage … The absence of any legal aid at Stage One of an appeal to a UT on a point of law represents a major flaw in the current scheme as it is simply unrealistic to expect an appellant to draft an appeal on a point of law without any assistance.11

In the future, social security claimants who find themselves faced with an incorrect Upper Tribunal decision, or who win their case at the Upper Tribunal but find themselves on the receiving end of an appeal by the DWP12, HMRC13 or a local authority, could be facing the courts and the costs risks attached on their own or not at all.14

In practice, benefit claimants who wish to appeal decisions have to resort to charitable organisations to support them through the process. However these are seeing their funding cut, or they are not coping with increasing number of calls for help.15 There has also been some criticism from within the legal system with regard to persons with intellectual disabilities on matters of legal representation regarding privation of liberty; the same issues also apply to persons with psychosocial disabilities:

The Law Society, which represents solicitors throughout England and Wales, intervened [in a particular case]. Its president, Jonathan Smithers, said: “When a vulnerable person doesn’t have friends or family to represent them during a decision to restrict their liberty, it is vital that person is able to participate in the decision-making process . . . If this is not possible then they must have a legal representative to protect their rights as well as their health and general welfare. Those who are least able to defend themselves should not be sacrificed on the altar of austerity.” 16

 

Actively changing the narrative of workfare and welfare benefits

The narrative of welfare is changing drastically. As Friedi says, we are moving from a “what people have to do [to find work] to what they have to be [demonstrating the right attitude to be employable]17. This is exemplified through the new ‘Work and Health Programme’ planned to be rolled out in England and Wales.

This programme has many strands, including:

−   Embedding psychological services within Job Centres

−   Placing ‘job coaches’ within GP surgeries for people with certain conditions (specifically people with mental health issues): the ‘Working Better’ pilot scheme is funded by the Department for Work and Pensions and the coaches will be provided by welfare to work agency, Remploy (a welfare-to-work subsidiary of the Maximus).

12325145_10153490835113527_1349725544_n

 

This programme blurs the boundary between health and welfare, health and work domains, in a way that has not happened before. This is a coordinated move to effectively bring in the benefits system within NHS care: joblessness, being unemployed becomes an illness, specifically a mental illness which needs to and care be cured through psychological therapies.

It will not only extend benefit conditionality into the NHS but also compromise clinical independence and clinical ethics. In practice, people who display the wrong attitude to work, to work placements or who have been unemployed for a long time will be referred to psychologists and given forced Cognitive Behavioural Therapy, and be sent many motivational emails and text messages throughout the week; or they will be prescribed referrals to an in-house ‘job coach’. Failure to comply with these forced prescriptions will trigger an immediate sanction regime. This will inevitably threaten if not destroy that first quality that patients place in their doctor, trust. People may become reluctant to say anything whether it is about their situation or their health for fear of being forced into the schemes.

 

CRPD violations:

Articles 1-5: (equality, choice, autonomy, capacity)

Persons with disabilities are specifically targeted by the new measures

 

Article 25 (Right to health):

Currently both schemes are in the early stages of being rolled out (pilot stage) and the official line claims that they are voluntary. However, as the Tory manifesto stated “We will help you back into work if you have a long-term yet treatable condition”, this is set to become compulsory: “People who might benefit from treatment should get the medical help they need so they can return to work. If they refuse a recommended treatment, we will review whether their benefits should be reduced.”(p. 28). However, being forced to receive “therapy” for a “treatable condition” is not the same thing as being offered support, which would imply that the individual is free to choose to take it up or not. Most observers agree that what is currently taking place on a voluntary basis as part of the pilot projects will become compulsory, which would only follow the UK Government’s own stance of applying any means to get people “back to work”18.

This means that people with mental health problems will no longer be able to freely choose to consent, or withhold their consent, to ‘treatment’. There is also a high risk that people will feel intimidated into consenting to undergo these ‘therapies’. This is very similar to what happens in psychiatry whereby the right to health is invoked to forcibly treat people for their own good, “in their best interest” … but as their only option. To decline a recommended treatment or to fail to comply to the letter with the injunctions and expectations of the system will result in benefits sanctions.

Cognitive behavioural therapy (CBT), the approach chosen by the Government is highly controversial and does not suit everybody. Therefore a one-fits-all approach, whether it is applied forcibly or not, will be counterproductive as it may make some people feel worse (counter to their right to health) and shows the total lack of understanding of the often complex and singular situations of persons with disabilities.

 

Art 10: (Right to life)

Any Government that uses coercion and sanctions as a means to a political end must take full responsibility for the consequences of its actions. As with the Work Capability Assessment, people being coerced into receiving behavioural or any therapy they did not fully consent to, may experience adverse effects (making people even more unwell by making them even poorer and forcing them to live in a constant state of anxiety, making them suicidal).

It also denies the person as an autonomous individual able to make their own choices (Art 12, Equal recognition before the law; Art 16, Freedom from exploitation, violence and abuse and threatens their integrity (Art 17)).

It also contradicts the Government’s own claims that it is doing everything to make UK domestic law compliant with the CRPD:

The Convention is not legally binding in domestic law in the UK but is given effect through the comprehensive range of existing and developing legislation, policies and programmes that are collectively delivering the Government’s vision of equality.19

 

Article 17 (Protecting the integrity of the person): The issue of coercion goes beyond “designating work as a cure for unemployment and poverty”20 as Friedli puts it; this is also about changing people’s societal status and identity. In the new narrative, there are productive and unproductive individuals, therefore there is no such thing as a long-term sick or disabled person (all disabilities included). These notions pretty much disappear in the name of inclusiveness and fairness (in relation to so-called “hard working people”21 who are deserving of help and will do their utmost not to rely on the state for their individual needs).

Language is indeed important in this context, and language is shifting. As many have observed, ‘sick notes’ have become ‘fit notes’, the term ‘disability’ too is being erased as ‘Disability Living Allowance’ becomes ‘Personal Individual Payment’. This speaks to a simplistic but powerful narrative of ‘can-do-no-matter-what’ supported by having a compulsory ‘right attitude, which is where psychocompulsion comes in. Nudging then forcing people into having the ‘right attitude’.

 

Forcing people back to work by reducing their welfare benefits

Persons with disabilities are clearly targeted over and above other categories of individuals (Art 1-5 equality, discrimination, choice, autonomy). Indeed, another form of coercion has emerged through a recent drastic to the ESA in weekly support from £103 to £73, contained in the Welfare Reform and Work Bill. It will apply to new ESA claimants in the work-related activity group. This vote, pushed through Parliament on 7 March 201622, is meant to “incentivise disabled people to find work quicker”. This (purely ideological) decision will not only strip them of financial security but also reinforce the idea, by bringing the rate into line with Jobseeker’s Allowance, that disability no longer exists, that anyone can and should work, that there are only productive (deserving) and unproductive (undeserving) people.

 

An unethical social experiment

It has come to light that these new programmes are also the subject of ‘research’. The new Work and Health Programme is currently at a research and trialing stage23. As Kitty Jones writes,

Part of the experimental nudge element of this research entails enlisting GPs to “prescribe” job coaches, and to participate in constructing “a health and work passport to collate employment and health information.24

However, this ‘research’ (if one can call it so), has been heavily criticised because it is not sanctioned according to the usual robust ethical guidelines. Research that adheres to robust ethical guidelines would absolutely seek not to cause harm to its participants, and would seek their informed consent beforehand25. This is not the case here where claimants are the participants are the involuntary and ‘unconsented’ participants of an experiment they know nothing about.

There are a wide range of legal and Human Rights implications connected with experimentation and research trials conducted on social groups and human subjects.26

A spokesperson for Disabled People Against Cuts (DPAC), talked of the UN CRPD Committee’s visit to the UK and described the situation thus:

It means the UN will examine the vicious and punitive attacks on disabled people’s independent living as well as the cuts which have seen so many placed in inhuman circumstances and has led to unnecessary deaths.27

 

Articles 1-5: discrimination against persons with disabilities who are targeted through this programme.

Article 9: right to communication: The existence of this experiment and the format of its conduct has not been communicated with the claimants (the participants).

 

Article 10 (Right to Life): when coercion brings people to the brink of suicide or they succeed in killing themselves (one court case at least has pronounced on the clear link between benefits sanctions and reasons for suicide):

Research from the Black Triangle campaign group found more than 80 cases of suicide directly linked to billions of pounds in benefit cuts. John McArdle, co-founder of Black Triangle, said: “The Dept of Work and Pensions refuses to reveal the findings of their own peer reviews of suicides linked to the sanctions so we will never know the truth in those cases. . . He said the Work Capability Assessment regime applied to all sick and disabled people, without adequate risk assessment ‘built into the system’28

Mortality rates bring their own tales of woe:

[The government] published or, rather, was forced to after several Freedom of Information requests – that show more than 80 people a month are dying after being declared “fit for work”. These are complex figures but early analysis points to two notable facts. First that

2,380 people died between December 2011 and February 2014 shortly after being judged “fit for work” and rejected for the sickness and disability benefit, Employment and Support Allowance (ESA). We also now know that 7,200 claimants died after being awarded ESA and being placed in the work-related activity group – by definition, people whom the government had judged were able to “prepare” to get back to work.29

 

Articles 12, 17, 19: Coercive measures embedded in all aspects of the Work and Health Programme and its various tools and strategies run counter to the premise that the person is free and able to make choices for themselves, and considerably threatens their right to independent living when they are forced into poverty.

Nothing seems to shift the current UK Government’s assault on people with disabilities or long term sickness, and on their human rights. Not the many Freedom of Information requests which have revealed that the DWP did look into the death of 60 benefits claimants but sat on the findings; nor a Commons Select Committee inquiry into benefits sanctions in April 2015, nor the visit by the UN CRPD committee at the request of a disability group (DPAC) in the late autumn of 2015, nor a coroner’s report clearly linking a claimant’s suicide to the stress caused by the Work Capability Assessment. The UK is effectively engineering and encouraging coercive and punitive policies that specifically target people with disabilities and the long term sick, putting their lives and their future at high risk. Many have observed that ‘austerity’ was only ever an excuse to establish and implement ideological policies. This is not about saving money in hard times; this is about the willful annihilation of the disabled, either through language or deeds.

 

Anne-Laure Donskoy

March 2016

 

Notes:

1https://kittysjones.wordpress.com/2015/11/28/the-goverments-reductive-positivistic-approach-to-social-research- is-a-nudge-back-to-the-nineteenth-century/– The idea that it is both possible and legitimate for governments, public and private institutions to affect and change the behaviours of citizens whilst also [controversially] “respecting freedom of choice.”

2 Friedli L, et al. Med Humanit 2015;41:40–47. doi:10.1136/medhum-2014-010622

3 See also this short film: https://vimeo.com/157125824

4 http://www.behaviouralinsights.co.uk/

5 http://www.disabilitynewsservice.com/coroners-ground-breaking-verdict-suicide-was-triggered-by-fit-for-work-test/

6Cole M. Sociology contra government? The contest for the meaning of unemployment in UK policy debates. Work Employment Soc 2008;22(1):27–43.

7 Even the Department of Work and Pensions (DWP) who are driving these policies, acknowledged in a 2006 study have put forth provisos that “account must be taken of the nature and quality of work and its social context” and that, for sick and disabled people, “there is little direct reference or linkage to scientific evidence on the physical or mental health benefits of (early) (return to) work for sick or disabled people.” 8https://www.gov.uk/government/publications/is-work-good-for-your-health-and-well-being

https://www.rethink.org/media-centre/2012/09/new-gp-survey-shows-government-welfare-test-is-pushing- vulnerable-people-to-the-brink

9 See note 3

10 https://www.wsws.org/en/articles/2015/02/05/welf-f05.html

11 https://gclaw.wordpress.com/2014/05/30/what-legal-aid-is-still-available-for-work-undertaken-on-welfare-benefits-post-laspo/

12 Department of Works and Pensions

13 Her Majesty’s Revenue and Customs

14 http://www.cpag.org.uk/content/legal-aid-reform-or-termination

15 http://www.theguardian.com/society/2014/feb/25/benefit-cuts-welfare-linked-mental-health

16 http://www.theguardian.com/society/2016/mar/10/judge-challenges-government-over-legal-representation-for-

vulnerable-people?CMP=share_btn_tw

17 https://www.youtube.com/watch?v=Dt-V0e0-ipY

18 A side point has been made by Friedli and others about the questionable ethics of those clinical psychologists who accept to take part in such initiatives and about the rapid expansion of the back-to-work industry.

19 Office for Disability Issues, UK Initial Report On the UN Convention on the Rights of Persons with Disabilities, May 2011,

www.odi.gov.uk/un-report

20 https://www.youtube.com/watch?v=Dt-V0e0-ipY

21 An expression used as a constant leitmotiv by the UK government.

22 Ministers claimed “financial privilege” to assert the Commons’ right to have the final say on budgetary measures

23 http://php.york.ac.uk/inst/spru/research/summs/esa.php

24 https://kittysjones.wordpress.com/2015/12/14/the-department-for-work-and-pensions-dont-know-what-their-ethical-and- safeguarding-guidelines-are-but-still-claim-they-have-some/

25 https://en.wikipedia.org/wiki/Ethical_research_in_social_science

26 See note 15

27 http://www.disabilitynewsservice.com/confirmed-un-is-investigating-uks-grave-violations-of-disabled-peoples-rights/

28http://www.mirror.co.uk/news/uk-news/more-80-suicide-cases-directly-5634404

29 http://www.theguardian.com/commentisfree/2015/aug/27/death-britains-benefits-system-fit-for-work-safety-net

 

 

Contribution to the Campaign to Support the CRPD Absolute Prohibition of Commitment and Forced Treatment: María Teresa Fernández Vázquez (Mexico)

an English summary of the Spanish original posted at https://absoluteprohibition.wordpress.com/2016/03/18/aporte-a-la-campana-por-la-prohibicion-absoluta-en-la-cdpd-de-los-tratamientos-forzosos-y-los-internamientos-involuntarios-maria-teresa-fernandez-mexico/ and at https://sodisperu.org/2016/03/14/aporte-a-la-campana-por-la-prohibicion-absoluta-en-la-cdpd-de-los-tratamientos-forzosos-y-los-internamientos-involuntarios/

In this text I try to argue my support for the Campaign from three different approaches. First, from a humanistic and social perspective that sees the human person as a unique and irreducible being, whose “inexhaustible potential of existence” [1] unfolds and may unfold in infinite ways and expressions, all of which are equally valuable and precious. For centuries, however, persons with disabilities in general, and persons with psychosocial disabilities in particular, have been put down and aside, and their expressions rarely acknowledged or approved by the vast majority. Either through ignorance, fear, negligence, lust for power and control, etc., both governments and societies have been ready to repress human conducts that do not fit the socially construed parameters already embedded in unquestioned norms, habits, symbols and cultural stereotypes. So that the status quo is maintained. We should consider any attempt at repression of human expression as a form of social and political oppression that should not be tolerated. Instead, societies should open themselves to human diversity, and build with all those who are different a permanent dialogue; create – hand in hand with them – new forms of social interaction and coexistence that enrich us all. To this I bet.

Secondly, I talk from my personal experience as the sister of a man who in his adolescence was diagnosed with epilepsy and later in his life became an alcoholic. My brother was confined to health centers, “farms” and psychiatric hospitals on the recommendation of his treating physicians. I can testify the increasing deterioration suffered by my brother after each placement, which culminated with his painful and early death. His commitments were absolutely intolerable and ominous: for him, for us as his family, and for us all. I deeply regret that we did not have access to the information, advice, proper support or the services that would have allowed my brother to live his life differently, according to his needs and potential; humanly, in short. The worst of it all is that today – forty years later – things have not changed much. There is still the same lack of such: information, advice, proper support and services. People with psychosocial disabilities keep on being ill-treated and committed, even against their will; even if there is proved evidence that such treatments do not work, but, on the contrary, they do profound and irreversible harm. Both: governments (through laws, policies and lack of political will), health professionals and society as a whole continue to condemn persons with psychosocial disabilities to oblivion and to death, and do it with absolute impunity. This too is unacceptable and has to be changed. The UN Convention on the rights of persons with disabilities tells us how.

The third perspective I support the Campaign from is that of the UN Convention on the Rights of Persons with Disabilities, being myself a person with a physical disability and thus actively involved in its process. Complying with the Convention means respecting the dignity and individual autonomy of all persons with disabilities, as well as respecting their right to equality and non discrimination, to personal liberty and security. As the CRPD Committee declares: “forced treatment by psychiatric and other health and medical professionals is a violation of the right to equal recognition before the law (art. 5) and an infringement of the rights to personal integrity (art. 17); freedom from torture (art. 15); and freedom from violence, exploitation and abuse (art. 16). This practice denies the legal capacity of a person to choose medical treatment and is therefore a violation of article 12 of the Convention” (Par. 42).[2] The Committee also states that the segregation of persons with disabilities in institutions violates a number of the rights guaranteed under the Convention (Par. 46).

It is absolutely unacceptable, under the Convention, not to respect the dignity of persons with psychosocial disabilities, or to subject them to scrutiny and rude, authoritative assessments. Nor is admissible for anyone to attribute himself the faculty to decide in his opinion what best suits them, or to hold them in places where they loose everything: their autonomy, their freedom, and even their dignity. Places where they remain – subjected and powerless – under the absolute control of other persons’ will – never their own – and their integrity is lacerated. As the CRPD Committee clearly declares, such practices are in frank violation of the UN Convention on the rights of persons with disabilities and must be eradicated.

Instead, States Parties to the Convention – as well as the whole of societies – should fulfill their moral and legal obligation to eradicate all existing barriers and take all the necessary measures to guarantee that people with psychosocial disabilities enjoy each and every of their fundamental rights and are included as active and irreplaceable parts of society on an equal basis with others.

 

[1] Boff, Leonardo. Tiempo de la trascendencia, el ser humano como un proyecto infinito, Santander, Sal Terrae, Brasil, 2000.

[2] Committee on the Rights of Persons with Disabilities, General Comment No. 1 on Article 12 (2014).

Aporte a la Campaña por la “Prohibición Absoluta en la CDPD de los Tratamientos Forzosos y los Internamientos Involuntarios”: María Teresa Fernández (México)

https://sodisperu.org/2016/03/14/aporte-a-la-campana-por-la-prohibicion-absoluta-en-la-cdpd-de-los-tratamientos-forzosos-y-los-internamientos-involuntarios/

La institucionalización de personas con discapacidad es una declaración de incompetencia de las autoridades gubernamentales y de las sociedades frente al fenómeno que representa la existencia humana. Una declaración de soberbia supina y de falta de voluntad; también, de indolencia, y también, de impunidad. Nos atribuimos la facultad de decidir si una a una de estas personas debe vivir, y cómo; o debe morir – y literalmente – encerrada entre muros estrechos e indiferentes, atada a una cama, un catre, un poste; sometida a un medicamento o a un cierto trato, el que nos venga a bien dispensarle; reducida y frustrada en sus posibilidades y sueños, sin más compañía que su propia intimidad diferente y asustada. Y nos creemos juiciosos, protectores, responsables – éticos. Nos decimos humanos y nos damos baños de pureza. Mejor sería hacerlo en el Ganges.

Mi hermano fue diagnosticado con epilepsia cuando entró en la adolescencia. Se hizo alcohólico después. Me llevaba 18 años. Fue internado varias veces en distintos centros, hospitales y “granjas”. Cada vez que salía – de más en más aminorado – había perdido algo nuevo: el brillo de sus ojos, su sonrisa franca y espontánea, alguna más de sus ganas de vivir.

Y sin embargo seguimos. Seguimos sin prestar atención a lo que filósofos, teólogos, humanistas, han venido repitiendo a lo largo de la historia: el ser humano – como sus expresiones y manifestaciones – es único e irreductible, como inagotable es su potencial de existencia. Nuestra pequeñez y cortedad de miras – aunadas a nuestras ansias de “normalidad”, de resultados y de eficacia; de absurdos absurdos, pues – no alcanza, siquiera, a preguntarse lo que esas cualidades de “único” y de “irreductible”, en relación con la persona humana, puedan significar.

Si no, ¿por qué, a pesar de los tantos “avances”:  científicos, tecnológicos, garantistas de derechos, seguimos sin ser capaces de aceptar que el ser humano tiene una existencia “condenada a abrir caminos siempre nuevos y siempre sorprendentes”[1]?, ¿por qué no nos permitimos el diálogo posible – y promisorio – con las diversas percepciones y expresiones humanas de la realidad?

Cuando un niño es inquieto, o “de más” ; o un adolescente, desinteresado, o su respuesta es glacial; cuando una mujer rompe en llanto, o monta en cólera, ante – decimos – “la menor provocación”, no tardamos en enjuiciar su conducta, y diagnosticarla, y patologizarla; no sólo su conducta, su ser por entero. Son pocos y cortos los pasos para transitar del juicio al diagnóstico y de ahí a la etiqueta – que lo será, ya para siempre, incuestionable e inamovible; y luego, a la medicalización, y al mismo tiempo, o poco después, al encierro. Y en este apresurado camino nos hemos olvidado:  de él, de ella, de la persona humana que ahí vivía.  Ya hemos llegado – y con plena conciencia – al umbral. Es la muerte. Una muerte que  – pareciera que confiamos – todo lo resolverá; o por lo menos, hemos logrado que así pensando y haciendo todo se resuelva, al menos, para nosotros. La impunidad.

Cada vez que mi hermano salía de uno de esos encierros nos decía que no quería más: que se lo llevaran, que lo encerraran, que lo amarraran, que lo durmieran, que le aplicaran electro shocks. Que lo mal trataran, que lo desnudaran, que lo despojaran, hasta de su dignidad. Era intolerable. Era ominoso. Yo era muy joven. Hoy tengo 64 años. Hace 40 que mi hermano murió en uno cualquiera de esos hospitales. Sigue vivo en mí.

Estos años me han servido para aprender que a quien le importa lo humano, se propone indagar lo que hay ahí adentro de ese otro, también humano. Descubrir su razón, su interés, su necesidad, su intención, su propuesta, su expresión – diferentes. Y vestir su piel. Y estar dispuesto a moverse y a tender puentes – y cruzar esos puentes.

Por eso me pareció extraordinario que el proceso de negociación de lo que llegaría a ser la Convención de Naciones Unidas sobre los derechos de las personas con discapacidad (CDPD, 2006),[2] hubiera asumido ese reto:  abrir sus puertas – y poner oídos atentos – a lo que las propias personas con discapacidad psicosocial tenían que decir sobre ellas mismas: que son seres humanos, iguales, íntegros e integrales, redondos; formados e  informados; presentes, pensantes, sintientes, activos y comprometidos; con las mismas necesidades y búsquedas de cualquier otro ser humano – y con los mismos derechos y obligaciones; y aún así, cada una y cada uno, con maneras y expresiones distintas, únicas, propias, privadas: las suyas. Como usted, apreciable lector; como yo también, y como todas y todos. Y tan así, que la intervención de estas personas con discapacidad en las negociaciones para la Convención conmocionó – impactó –, y fue capaz de crear posibilidades nunca antes vislumbradas, para ellas, para las y los demás: Un camino al diálogo real con la diversidad.  El inicio de un movimiento franco hacia la aprehensión – y la inclusión – de formas variadas de ser y estar en el mundo. Para desde ahí, aprender. Y desde ahí, convivir. Desde ahí, transformarse y transformar.

Hasta entonces, no había pasado todavía que alguien defendiera públicamente, y con tanta fuerza y claridad, que no es posible vivir ignorando o aniquilando a seres humanos, y por el simple hecho de no ser capaces – nosotros – de inteligir sus maneras; o porque molesta que griten fuerte y disonante cuando el mundo les duele; o porque amenazan los referentes de los útiles y cómodos statu quo.

Las personas con discapacidad psicosocial desmantelaron  – en y con la Convención – uno a uno de los mitos que nos hemos fabricado sobre ellas: su indefensión, su fragilidad, su “peligrosidad”; su incapacidad: de tomar decisiones, de asumir obligaciones y responsabilidades; de vivir en este mundo y atreverse a cuestionarlo; de aportar, de enriquecer-nos.  No es gratuito, entonces, que – en y desde la Convención –, no quepa más hacer distingos sobre ellas. O no, si para atentar en contra de su dignidad, o para propiciar que se vulneren sus derechos; tampoco para someterlas a escrutinios y valoraciones groseras, autoritarias y sin fundamento, o al menos, moral. O para que alguien pueda atribuirse la facultad de poder decidir a su juicio lo que mejor les conviene, o de recluirlas en instancias en las que todo lo pierdan, incluso su autonomía y su libertad; incluso su dignidad.  Lugares donde queden – sometidas e impotentes – bajo el control absoluto de otra u otras voluntades – nunca la suya – y se lacere su integridad. ¿Qué razón – y qué derecho – le asiste: al Estado, a los profesionales de la salud, a las familias, a la sociedad en general, para permitirse un acto semejante?, me pregunto y se lo pregunto, sí, a usted, apreciable lector o lectora.

Todas las personas con discapacidad han sido reconocidas por la Convención con la misma dignidad y derechos que el resto de las personas.  Derechos de las personas con discapacidad – “incluidas aquellas que necesitan un apoyo más intenso” (Preámbulo CDPD, inciso j)) – son que se respete su dignidad y su valor; que se respete y aprecie su diferencia, tanto como su autonomía, su independencia y su libertad para tomar sus propias decisiones  – incluso, cuando estas decisiones puedan no coincidir con las nuestras, o nuestras opiniones y creencias – o nuestra voluntad; o nuestros intereses. Es también un derecho de todas las personas con discapacidad –reconocido por la Convención– que se les proporcionen los apoyos que ellas estimen necesitar para tomar sus propias decisiones (Artículo 12.3 CDPD), incluida la de dónde y con quién vivir, y sin que se vean obligadas a vivir con arreglo a un sistema de vida específico (Artículo 19. a)CDPD). También es derecho de ellas disponer de los servicios de apoyo que faciliten su existencia y su inclusión en la comunidad y eviten que se les separe o aísle de ésta (artículo 19. b) CDPD).

El Comité de Naciones Unidas sobre los Derechos de las Personas con Discapacidad (CRPD), en su Observación General No.1,[3] ha abundado sobre el alcance del derecho de las personas con discapacidad a tomar sus propias decisiones y que éstas sean respetadas: “en todo momento, incluso en situaciones de crisis, deben respetarse la autonomía individual y la capacidad de las personas con discapacidad de adoptar decisiones,” (O.G.No.1 CRPD, Párr.18). También ha afirmado que entre estas decisiones se incluyen aquellas “decisiones fundamentales con respecto a su salud” (O.G.No.1 CRPD, Párr. 8); y más específicamente, el Comité ha reconocido el derecho de las personas con discapacidad a no ser internadas contra su voluntad en una institución de salud mental y a no ser obligadas a someterse a un tratamiento de salud mental (Artículo 14 CDPD) (O.G.No.1 CRPD, Párr. 31). También el Comité CRPD ha dejado en claro que todas las formas de apoyo en la toma de decisiones que las personas con discapacidad opten por recibir, “incluidas las formas más intensas, deben estar basadas en la voluntad y las preferencias de la persona, no en lo que se suponga que es su interés superior objetivo.” (O.G.No.1 CRPD, Párr. 29, Inciso b)).

Lamento profundamente que nada de esto fuera del dominio público cuando yo era niña. Cuando mi madre, al no disponer de los recursos necesarios: información, asesoramiento, apoyos y servicios – porque no existían, o eran inaccesibles – no encontró mejor opción para él, para ella y para mí, que poner a mi hermano a disposición de los médicos. Ella creyendo que sabían lo que era debido hacer; ellos alegando saberlo, a pesar de que un número incontable de historias – entre las que después se contaría también la de mi hermano – testimoniaban fehacientemente lo contrario.

Gracias a mi involucramiento con los procesos sobre la Convención de Naciones Unidas sobre los Derechos de las Personas con Discapacidad, he aprendido que es éticamente insostenible pretender – usted, yo, los gobiernos y las sociedades – seguir ignorando las incuestionables e infinitas realidades y posibilidades humanas. Que es inadmisible seguir apelando a maneras arcaicas y lugares comunes para enmascarar nuestra incapacidad de derribar barreras, estigmas y prejuicios, o nuestra falta – evidente – de voluntad. Como la que reconoce el valor de otras existencias y mantiene con ellas interacciones fecundas; la que incursiona en nuevas formas de acercamiento a las situaciones y de brindar atención y cuidados.

Hace 40 años no existían los servicios y los apoyos que habrían llevado la historia de mi hermano por otros caminos, hoy lo sabemos, menos crueles y fatales; que habrían permitido que él – con la debida asistencia – encontrara sus propias respuestas.  Al día de hoy, esos servicios y esos apoyos siguen sin estar disponibles, o aquí, en mi país. A saber a cuántas más vidas les han hecho falta también para crearse y recrearse a sí mismas; a cuántas personas más su inexistencia las sigue condenando al olvido – o a la muerte. De las grandes claves para el cambio, y algo tan sencillo y a la vez tan crucial para producirlo, hoy sigue sin ser habitado; sin siquiera ser explorado; o aquí, en mi país. Esto también es inaceptable.

Es por todo eso que yo me pronuncio – y decididamente – por la “Prohibición Absoluta en la CDPD de los Tratamientos Forzosos y los Internamientos Involuntarios”. 

Porque, en resumen, considero que estas prácticas:

  • Son reductivas de la persona humana y de la situación existencial que experimenta;
  • Van contra la dignidad, la autonomía y la libertad de las personas con discapacidad (Art. 3 CDPD);
  • “Medicalizan” problemas que son de índole social, en los que intervienen otros elementos contextuales: familiares, sociales, e incluso políticos, que entonces son ignorados, desatendidos y perpetuados; incluso, profundizados;
  • Son invasivas, autoritarias y jerárquicas, al aplicarse a las personas aún en contra de su voluntad;
  • Son cuestionables en sus fines, en sus efectos y consecuencias – muchas irreversibles y fatales –, y en su efectividad.
  • Refuerzan los estigmas y prejuicios sociales sobre las personas con discapacidad psicosocial, al utilizar categorías diagnósticas que – además de cuestionables – encasillan arbitraria y vitaliciamente a las personas, haciéndolas vulnerables a la exclusión, a la discriminación y a la muerte – la social, la biológica;
  • Son violatorias de derechos inalienables de las personas con discapacidad como, entre otros, el derecho a no ser privadas de su libertad por motivo de discapacidad (Art. 14 CDPD); el derecho a otorgar su consentimiento libre e informado sobre los tratamientos médicos que se le propongan (Art. 25. Inciso d)); el derecho a la integridad física y moral (Art. 16); el derecho a vivir de manera autónoma e independiente en la comunidad y a ser incluida como parte activa y necesaria de ella (Art.19 CDPD).

Con mi pronunciamiento en apoyo a la “Prohibición Absoluta” quiero honrar la memoria de mi hermano, sí; pero también porque yo misma soy persona con discapacidad, en mi caso motriz, y sé lo que es y significa ser discriminada y excluida por tener una discapacidad. Pero, además, porque si bien he logrado evitar ser diagnosticada o etiquetada como persona con discapacidad psicosocial, yo también encuentro muy difícil lidiar con los tantos absurdos de nuestro mundo, y acomodarme, y cada vez, en alguna de sus escasas y limitadas formas permitidas de ser y de estar en él.

Y porque sueño.  Sueño con una humanidad polifónica y multiforme; lo suficientemente abierta, crítica y dialogante para permitirse tender hacia la otredad, en lugar de ignorarla, repudiarla o temerle; una humanidad que sabe vivir junto al otro y crear –con él–  realidades e intercambios nuevos, permeables, interdependientes, nutricios. Sueño mujeres y hombres convencidos de que toda y cualquier expresión humana – por ajena o chocante que nos resulte o parezca – no puede, al final, sino complementarnos, fortalecernos, enriquecernos.

Y porque sé que tarde o temprano así se habrá demostrado.


[1] Boff, Leonardo. Tiempo de la trascendencia, el ser humano como un proyecto infinito, Santander, Sal Terrae, Brasil, 2000.
[2] ONU, Convención sobre los Derechos de las Personas con Discapacidad, Resolución A/RES/61/106, Sexagésimo primer período de sesiones, Asamblea General, Naciones Unidas, del 13 de diciembre de 2006. Entró en vigor el 3 de mayo de 2008. Disponible en: http://www.un.org/disabilities/documents/convention/convoptprot-s.pdf
[3] ONU, Observación General No.1 (2014) sobre el Artículo 12: Igual reconocimiento como persona ante la ley, Comité sobre los Derechos de las Personas con Discapacidad, 11º período de sesiones. ONU Doc. CRPD/C/GC/1, del 19 de mayo de 2014.

Pueden leer más de la Campaña #ProhibiciónAbsolutaen: https://absoluteprohibition.wordpress.com/