REPORT FOR THE QUADRENNIAL REVIEW OF THE IMPLEMENTATION OF THE WORLD PROGRAMME OF ACTION ON DISABILITY

Tina Minkowitz, JD
For World Network of Users and Survivors of Psychiatry

World Network of Users and Survivors of Psychiatry is a global forum and voice of users and survivors of psychiatry, to promote our rights and interests. A user or survivor of psychiatry is self-defined as a person who has experienced madness and/or mental health problems and/or has used or survived psychiatry / mental health services.

The terms "user" and "survivor" are often used to denote, respectively, people who use mental health services and people who have survived human rights abuses by the mental health system. A person may be a user, a survivor, or both. The term "consumer" is used in the US as roughly similar to "user". The US movement also uses the term "c/s/x" to indicate consumers, survivors and ex-patients or ex-inmates.

This report is intended to give an illustration of some urgent human rights problems faced by people with psychiatric disabilities. We have not attempted to address the situation in every country or to provide a comprehensive picture for each country. We are, however, satisfied that the information presented is accurate and pertinent to the quadrennial review and representative of global rights problems in many developed and developing states.

Acknowledgements

The following people are among those who contributed information, reference materials, and suggestions. Sylvia Caras also contributed copy-editing.

Janet Amegatcher, human rights attorney, WILDAF (Women in Law and Development in Africa), Accra, Ghana
Karl Bach Jensen, Board Member, World Network of Users and Survivors of Psychiatry; Board Member, Danish National Association of Users and Ex-users of Psychiatry (LAP), Denmark
Janice Campbell (UK) - ECT survivor activist, researcher and human rights campaigner
Sylvia Caras, PhD, Founder, peoplewho.org
Bhargavi V. Davar, Director, Center for Advocacy in Mental Health, Pune, India
Cully Downer, Brighton, UK
Iris Holling, Co-Chair, World Network of Users and Survivors of Psychiatry, Germany
Mr. Sci. Reima Ana Maglalic, Bosnia and Herzegovina (BiH)
Eric Rosenthal, Executive Director, mental Disability Rights International
Mari Yamamoto, Japan National Group of Mentally Disabled People
Laura Ziegler, human rights activist and paralegal, Vermont, USA

Introduction

Despite cultural differences and difference in level of development between countries described in this report, discrimination faced by people labeled mentally ill is an urgent and often life-and-death issue in many parts of the world. Our reports of publicized atrocities come from Bulgaria, Kosovo, the United States, Japan, India, and Denmark. The reports from NGOs and advocates show that the publicized atrocities are only the tip of the iceberg.

Perhaps one of the most widespread forms of discrimination faced by people labeled mentally ill is poverty and social exclusion. From Ghana, Bosnia and Herzegovina (BiH), the United States, India and Japan, we hear reports of socio-economic problems such as poor living conditions, lack of financial and other necessary support, insufficient availability of housing, difficulties finding work and difficulties in gaining access to opportunities in daily life. Also near-universally, people remain in institutions, deprived of their freedom, for lack of housing and/or support to live in the community, as in India and Ghana where assistance in rehabilitation and reintegration into the community is unavailable. In Kosovo, Japan, Germany and the US as well, there are people detained in institutions because there is nowhere else for them to go.

Deprivation of free choice occurs in many forms. Ghana lacks any legal protection of the rights of people who are in institutions voluntarily or involuntarily. In Japan and India, surrogate decision-making is the dominant practice and informed consent is rare. No country is known to have abolished confinement or detention on the basis of disability, coerced medication with psychotropic drugs is so common that it is often unquestioned. Increasingly punitive and restrictive laws are being passed to extend psychiatric coercion, including coerced medication with psychotropic drugs, to community settings. In Japan, the UK, and the US, where such laws have been passed or are being considered, the same false association of violence with mental illness is used to promote these laws. Even without legal coercion, the practice of making receipt of services contingent on accepting other unwanted services, reported in the US and UK, effectively deprives many people of choice, and prevents others from seeking services that they do want.

Coerced psychiatric intervention is degrading and it can cause lasting physical and psychological harm. The revival of electroshock in India, the US, Japan, and elsewhere, should be of concern to human rights advocates. So should medication with psychotropic drugs such as neuroleptics , whether used as a routine treatment (as described in the report from BiH) or used as a form of restraint as described in the report on Kosovo. Clearly when used as a restraint or punishment such interventions violate human rights. When demarcated as a treatment, perhaps they should be challenged even more: when does treatment, especially against a person's will, become torture?

Atrocities

Atrocities taking place under the auspices of mental health systems and quasi-mental health systems continue to be exposed everywhere in the world. It is important to place these atrocities in the broader context of mental health systems, societies and governments (and their laws) that disrespect the human rights and the very humanity of people psychiatrists label with mental or psychological impairment. Mental health laws enabling coercion and detention of any individual who is called disabled, as well as similar customary practices that are not legally regulated, exist virtually everywhere in the world. Segregation and discrimination that is enshrined in the law inevitably promote and result in further disrespect for human rights. As noted by a US activist, a woman in a psychiatric institution was told "You can't dial 911 [the emergency police telephone number] in here."

The following is a summary of some atrocities that have received public attention within the past few years.

Bulgaria
Recently Amnesty International has published it's report: Far from the eyes of society. Systematic discrimination against people with mental disabilities. Amnesty International is concerned about the grave lack of respect for basic human rights of people with mental health disorders or developmental disabilities in Bulgaria. Some of their basic rights are systematically violated when being subjected to treatment against their will in psychiatric hospitals, or when placed for residential care in social care homes for children or adults with mental disabilities.

A number of field visits in October 2001 and January 2002 uncovered a range of issues concerning the grave violations of basic human rights of people who are placed in psychiatric institutions for compulsory treatment as well as the basic human rights of children and adults with mental disabilities who are placed in social care homes. These issues span a broad number of concerns from legal provisions and practices regarding compulsory treatment in psychiatric hospitals which result in arbitrary detention and violations of fair trial rights, to lack of rehabilitation for mentally disabled children, to living conditions and treatment available in social homes for adults. The latter were in a shocking state and conditions and treatment of residents in seven of the eight social homes visited, in the delegation's view, were considered to amount to cruel, inhuman and degrading treatment in contravention of international law. Similarly, the reported ill-treatment of patients in hospitals and of residents in social care homes, the observed methods of restraint and enforcement of seclusion, and the lack of adequate rehabilitation or adequate medical care found in social care homes would also amount to violations of Article 7 of the International Covenant on Civil and Political Rights (ICCPR) and Article 3 of the European Convention for the Protection of Human Rights and Fundamental Freedoms (ECHR) which prohibit torture or inhuman or degrading treatment or punishment. Bulgaria has ratified both of these treaties and is bound to enforce them fully.

A representative from WNUSP was invited to speak at a meeting in Sofia, Bulgaria Oct. 10 2002, when the report and its conclusions were presented and discussed with the Bulgarian authorities.

Kosovo
The United Nations must examine its own responsibility for ongoing human rights violations in the psychiatric institutions of Kosovo, still under UN administrative authority. Mental Disability Rights International reports that people are illegally confined in these filthy institutions, where they endure mind-numbing boredom, are given drugs as a form of restraint, and are physically and sexually assaulted. Authorities do not protect the women and men from such assault, and known abusers have not been removed from access to the women's wards. In the past when children were confined at one institution, they were sexually abused also. MDRI has called for the UN to take immediate action to prevent further abuse and to close down the largest institution as soon as community-based alternatives can be created for its residents.

United States
In the United States, publicity about the "adult home crisis" in New York State has brought to light inhuman conditions and deprivation of basic rights. At worst these conditions amount to deprivation of the right to life, when people taking medications that increase their vulnerability to suffering from hot temperatures are housed in sweltering rooms without air conditioning, and die from the heat. Several men in one institution had prostate surgery with no medical justification. These revelations have also led to public exposure of locked units in nursing homes that people are unable to leave for months at a time.

Japan and United States
Forced electroshock has come under scrutiny in Japan and in the US, despite professional determination to retain this in their "treatment arsenal". As discussed more fully below, a Japanese newspaper and the Japanese Municipal Hospital Association revealed that most ECT is done without general anesthesia and without a drug to prevent bodily convulsions, and that it is most often done without consent and is over-used to punish patients. The legislature of a US state considered the problem (but failed to enact any laws) following publicity about individuals challenging court-ordered ECT, one of whom called it "torture and traumatization."

India
In India, 28 people who were chained in a "healing temple" burned to death in a fire they could not escape. Public outcry resulted in removal of the chains from surviving inmates and inmates in similar institutions - but will that be enough? Advocates pointed out in their urgent appeal for action, that authorities had not adequately enforced laws and court decisions that protected the rights of people with psychiatric disabilities, and that private institutions like the one where people died were not even covered by those laws.

Denmark
In a recently published report the European Committee for the Prevention of Torture and Inhuman or Degrading Treatment or Punishment (CPT) has expressed "concern about the frequent recourse in Danish psychiatry to physical immobilisation of patients, which could last for several days, or even one week or more; on occasion, long periods of restraint were interrupted by brief periods without restraints. One "voluntary" patient met by the delegation had been restrained for 17 days, with a 24 hour interruption during this period." According to the CPT "applying instruments of physical restraint to psychiatric patients for days cannot have any medical justification and amounts, in the CPT's view, to ill-treatment."

Reports from Country NGOs and Human Rights Advocates

No support and confinement in Ghana
In Ghana, a human rights attorney reports that people who are considered mentally ill are "often reduced to beggars on the streets eating from gutters, rubbish dumps and such places." Some families try to keep them at home, but there are still those who "take the person to a prayer camp and have them chained and beaten to get the evil force causing the 'problem' to leave them." (Note that this is similar to the situation in India that was only remedied after people burned to death.)

Another problem is that "relatives abandon victims after they have been brought to the institution and have been stigmatized. The hospital/asylum is over-crowded and more people are showing signs of stress or disturbances and relatives and pushing them off their backs to be incarcerated.

"There are three main government hospitals/ mental institutions - Accra Psychiatric Hospital, Pantang Hospital and Ankaful Mental Hospital- in Ghana. These were built to cater for about a third of the number they are now catering for. There some private clinics that also provide mental care but most people cannot afford it.

"There is a Mental Health Act which is used to administer the affairs of the institutions. It does not deal with the fundamental human rights of persons who have been brought in voluntarily or involuntarily to the hospitals. There is no provision for rehabilitation and re-integration back into society. There is a lot of emotional, psychological and physical abuse and neglect of these persons. Potentials of these persons are wasted and /or destroyed. These problems are left for the individual victims and/or family / friends to fight. It is frustrating and when everyone gives up on the victim, he is left without any support - financial / material or any other kind."

Deprivation of civil rights in India
In India, people labeled with psychiatric disability lose their civil rights to marriage, contracting, holding public office, and asset management. For this reason, it is left to guardians to apply for government disability benefits on the person's behalf, and often it is done for the benefit of the family rather than the person her/himself.

A leader in the Indian user/survivor movement further states: "We have an equal opportunities for disability Act (Persons with Disability Act, 1995) which also includes 'disability due to chronic mental illness'. However, this Act has not been implemented anywhere in the country.

"The involuntary commitment Act (Mental Health Act, 1987) regulates admission and discharge from mental hospitals, but says nothing at all about disability and the fundamental right to rehabilitation / reintegration into mainstream society. Because of this, people incarcerated live and perish in the hospitals with no accountability from the system. Addressal of individual problems are left to personal initiative of the hospital chief or some local NGO, but not mandated by law.

"Advocacy points for us have been the following:

• recognize right to rehab as a fundamental / constitutional right
• implement the persons with disability act with respect to psychiatric disability also
• reform all laws in keeping with values of self determination, justice and autonomy instead of welfarism and paternalism
• respect international instruments."

Backslash in human rights for people labelled with mental disorder all over Europe
In January 2000 the Steering Committee on Bioethics of the Council of Europe published for public consultation purposes a so-called "White Paper" , drawn up by it's Working Party on Psychiatry and Human Rights (CDBI-PH) with a view to drawing up guidelines to be included in a new legal instrument of the Council of Europe. In the White Paper suggestions were made to introduce compulsory psychiatric treatment in the community as European standard. Also the possibilities of reintroducing forced abortion and forced sterilisation were suggested in the White Paper. WNUSP strongly supported the European Network of (ex-)users and Survivors of Psychiatry in protesting against the suggestions of the White Paper. In September the Working Party (CDBI-PH) produced a "Draft Recommendation of the Committee of Ministers to member States to ensure the protection of the human rights and dignity of people with mental disorder, especially those placed as involuntary patients in a psychiatric establishment." The draft recommendation includes as a legal option compulsory treatment in the community, and in "exceptional cases" forced sterilisation and forced abortion. In the draft recommendation the existence of a mental disorder referring to mental illness, mental handicap and personality disorders and significant risk of serious harm to the health of the person concerned and/or to other persons are the main criteria for forced interventions. The draft recommendation has not been published for public consultation and in ENUSP and WNUSP we fear that the draft recommendation will pass directly from the Steering Committee on Bioethics to the Committee of Ministers of the Council of Europe for it's approval without any democratic process to take place and without the European user-/survivor movement and mental health communities to have any chance to campaign against this severe worsening of the human rights conditions of people labelled with mental disorder in Europe. WNUSP supports the ENUSP in demanding the draft recommendation to be published for public consultation before it is send to the Committee of Ministers for their approval.

Increased coercive psychiatry in UK, US, Japan and Netherlands
In the US, UK and Japan the governments are stepping up efforts to increase the coercive use of psychiatry, in campaigns emphasizing a discriminatory mischaracterization of people labeled with psychiatric disability as violent. At the same time, basic necessities like housing are scarce or unavailable, or provided on a contingent basis that deprives people of autonomy.

Survivor/user activists in the UK, through the NO Force Campaign, are opposing the draft Mental Health Act which would legalize compulsory treatment in the community, broaden the criteria for compulsory detention and remove the "treatability" criterion for psychiatric compulsion. The NO Force Campaign is joined by the Mental Health Alliance (a group of over 50 mental health charities), the Law Society and the Royal College of Nurses as well as UK Social Workers, and even by the Royal College of Psychiatrists. Some users particularly feared compulsory medication in the community.

According to a leader of the NO Force Campaign, "Past decisions by the European Commission and Court of Human Rights against the UK provided the impetus for the 1983 Act [which the one currently under discussion would replace]. The Commission was deeply troubled by the treatment of patients in hospital, particularly high security hospitals…By contrast, the impetus for the new draft legislation is protection of the public and retrenchment of human rights. Responding this way to highly publicized, unusual cases of violence by people with mental disabilities is not a good way to create law."

In the UK (as well as in some places in the US) personal assistance services covering help with household tasks are available for some people with disabilities. However, the possibility of compulsory psychiatric detention as a result of self-identifying as a person with a disability poses an unacceptable risk to some who could benefit from such assistance.

In the US, at least 37 states and the District of Columbia have passed laws authorizing coerced outpatient treatment. This goes on despite united opposition from user/survivor organizations and most mental health advocates including the International Association for Psychosocial Rehabilitation Services , and despite lack of support from the US National Association of State Mental Health Program Directors. As this report was being prepared, the US Congress was considering legislation to create a national registry of people who have been adjudicated to have mental illness or cognitive disabilities. Meanwhile, people living on government disability benefits cannot afford to pay for ordinary housing. Without a scarce subsidy many are forced into homelessness and into institutions such as adult homes or nursing homes, or to depend on mental health system housing which imposes restrictions on freedom and is contingent on accepting mental health services even if unwanted.

The US National Council on Disability, a federal agency mandated to coordinate disability policy, has recommended a "move towards a totally voluntary mental health system," to eliminate forced and harmful treatments and to support the development of user-controlled, culturally competent alternatives. However, these recommendations have been ignored by the legislature and by the President's "New Freedom Commission on Mental Health." The current administration has threatened three peer-run Technical Assistance Centers - organizations that provide assistance to consumer networks - with total defunding, spurred by a prominent mental health advisor, a psychiatrist who has publicly attacked the very notion of self-determination, consumer rights and advocacy.

In Japan, legislation has been introduced to create a special kind of trial for people accused of certain violent crimes and found not guilty by reason of insanity or to have diminished capacity. The Due Process clause in the constitution does not apply to these trials and the decision-makers are a judge and a psychiatrist. People can be sent to a hospital for an indefinite term or required to attend outpatient treatment on a 3-5 year probation. This move, like the initiatives in UK and US, is fueled by the persistent incorrect perception that people labeled with mental illness are more violent than others, and a singular instance of violence (the Ikeda school case) is being used to drive this misperception.

People labeled with mental illness in Japan also face difficulty with housing. If they are single and have no family, they are ineligible for public housing on account of their disability, and the government has admitted that 70,000 are locked in institutions solely because they have no place to live in the community.

In addition to this, we were reminded as this report was being completed, that the Netherlands has also enacted a law authorizing compulsory treatment in the community.

Increasing use of electroshock in India, Japan and US
The use of electroshock (ECT) is increasing in many regions of the world. This is alarming in the light of evidence that ECT causes brain damage and often severe permanent memory loss and cognitive impairment. An unconfirmed report stated that ECT is being widely used in Afghanistan because they had nothing else to offer the many women and men suffering from depression in the wake of the traumas that country has suffered.

Forced electroshock is widespread in India. ECT is often the first line of treatment chosen by many doctors, as they can make money out of it. In India, there is no regulation whatsoever of the practice. ECT is often administered in private clinics, without anesthesia (what is called 'direct ECT'). The professionals, some of them, even justify this saying that it may not always be possible to organize anesthesia facilities in a poor country. In many clinical settings, doctors unreservedly prescribe ECT without heeding to any norms (when, how often, reviewing, consent, etc.). The issue of consent is rarely looked into because of the predominant surrogate decision making.

In Japan, electroshock has been revived over the past decade, over the objections of the user/survivor movement. The Japanese Municipal Hospital Association (an association of public hospitals) found that electroshock is most often used "unmodified" - so that although people may be put to "sleep" first (with an injection of barbiturate) they experience bodily convulsions. Sometimes the ECT is done without even putting the person to "sleep" first. Only 35% of ECT is done with informed consent, and there is no legal protection for the right to refuse.

A leading activist in the user/survivor movement reports, "In Japan there are only a few anesthetists, and most mental hospitals cannot get them or pay for them. Besides this, ECT is often given to punish patients and in such cases there is no time to prepare for anesthesia." A leading newspaper reported that in Matsuzawa Hospital, run by Tokyo local government, with 1368 beds, there were some 2000 electroshocks done in the year 2000, 1750 of which were done without general anesthesia, with body convulsions and only an injection of barbiturate. The newspaper also found that most ECTs were without informed consent and that ECT was overused to punish patients. This publicity spurred the report of the Municipal Hospital Association.

Similarly to the situation in India, there is no regulation of the practice, and surrogate decision-making is predominant. Over 80% of the beds in Japan are in private hospitals and the public ones are relatively better for patients' rights. Therefore it is believed that the statistics for informed consent quoted above are even lower in the private hospitals.

In the US, the American Psychiatric Association has removed a prohibition on using ECT for behavior control from its revised guidelines on ECT. Statistics in one US state show a 125% increase in applications for court-ordered electroshock since 1997. Another report in the same state shows that electroshock is used primarily on women (confirming other reports with the same finding ), and that controlling behavior is considered acceptable as a justification for its use. The draft UK Mental Health Act authorizes use of ECT for reasons including behavior control. While a few US states have passed laws restricting the use of ECT, especially on minors, this is not the norm. We have learned that ECT is not commonly practiced in Slovenia , and it has been reported that Italy has "nearly abolished" electroshock by directive of the Minister of Health, and that it is nearly obsolete in Germany and Holland . However, advocates point out that ECT is still practiced in Germany, not extremely often, but becoming more acceptable again.

Gender and race affect likelihood of human rights abuses
Gender and race continue to put people at higher risk of discrimination and violence on account of being labeled with psychiatric disability. Studies conducted in the UK continue to show that Black people are labeled with schizophrenia at a higher rate than Whites. Schizophrenia is the diagnosis which is most synonymous with "madness" and is used to justify involuntary detention and administration of neuroleptic drugs.

Female gender also puts people at greater risk. Women in state hospitals in India have been subjected to forced sterilizations. Japanese activists reported an instance of forced abortion done in order to experiment on the fetus. As noted above, the sexual abuse of women in Kosovo institutions demands immediate investigation. The use of harmful electroshock treatments predominantly on women (reported in the US but likely occurring elsewhere as well) also requires attention.

Bosnia and Herzegovina Community Mental Health Centers
Bosnia and Herzegovina (BiH) began implementing mental health system reform after the signing of the Dayton Peace Accords in 1996, supported by the World Bank which, together with the Project of Rehabilitation of War Victims (PIU) stressed the need for both psychosocial and physical rehabilitation. The reform involves a shift in emphasis from institutions to community mental health centers. A recent report which surveyed and interviewed users and professionals in the centers noted that users' most difficult problems were socio-economic, and that their emotional or mental distress is most often related to trauma suffered during the war. Users and professionals made joint recommendations for more self-help groups and user space, and for more "occupational therapy" to earn income and to have worthwhile activities to do. However, users were more interested in actually finding paid work, which, because of discrimination and a distressed economy overall, was not likely to happen. One of the biggest wishes of service users is to stop medication use, and some report adverse effects and skepticism about value of the medication. The professionals do not discuss medication as a modality of treatment but appear to "accept it as a given." This raises the question of whether service users are able to exercise a right to free and informed consent when being treated with medication. Both users and professionals felt comfortable with "talking treatments" such as individual and group therapy, and users also appreciated having a place to socialize and do other activities. The user/survivor movement in BiH is growing, with 7 new user organizations since 2000 and a national organization that has joined the European Network of Users and Survivors of Psychiatry.

Conclusion

In this report, we have summarized the issues of concern to advocates in several regions of the world, in developed and developing countries. We value international collaboration in drawing attention to problems that are of worldwide scope.

People labeled with mental illness have often been overlooked or spoken for by others, when it comes to human rights. Despite some positive changes, such as the move towards community-based services and user involvement in Bosnia and Herzegovina (and other countries not dealt with in this report), serious problems persist in countries as far apart as Ghana, Japan and the US.

We believe that a Convention on Disability which respects all human rights, and protects the right to live as a person with a disability or as a person perceived to have a disability, will be of great value to us in asserting our rights. We also welcome the opportunity to collaborate with DESA, the Special Rapporteur on Disability, and other UN mechanisms such as the Office of the High Commissioner of Human Rights and the treaty-monitoring bodies.