By Michael Dudley and Fran GaleOn 29 November, Natalya Gorbanevskaya, Soviet dissident poet and translator, died in Paris. In August 1968, this mother of two was arrested, “diagnosed” with schizophrenia and underwent five years’ forcible psychiatric treatment at Moscow’s then-infamous Serbsky Institute. She famously protested in Moscow’s Red Square against the Soviet invasion of Czechoslovakia. Staging another Red Square protest on the 45th anniversary earlier this year, she and her companions were again detained.
Little is known of the current prevalence of psychiatric abuses globally. This is despite the notorious cases of the former USSR and Nazi Germany, among others, and notwithstanding episodic reports in recent times from China and former Soviet countries, and disturbing photographic images of appalling conditions for those in mental institutions and confined by their families or communities in developing countries (caging or chaining mentally ill people to prevent them wandering or self-harming is a well-known practice). Certainly mental health is covered by the UN Special Rapporteurs on Torture and the Right to Health — the former visiting all places of detention including mental health institutions — and is within scope for states reporting to and individuals informing the Committee on the Rights of Persons with Disabilities, and other UN conventions. Of even graver import than these examples however, are institutional abuses that induce mental illnesses; scenarios where governments knowing of these effects persist in such practices with impunity, often in defiance of UN reporting processes. The indefinite mandatory detention of asylum-seekers is one such example, and the Australian government is now an enduring, brazen offender.
Concerning coercion in psychiatry, treatment pressure is a daily reality for professionals consulted about life-threatening mental health problems where the patient’s judgment is reasonably thought to be impaired. For those who present with high levels of imminent risk mental health schedules may sometimes be unavoidable, but stigma and trauma constrain help-seeking by suicidal people — young people and young men in particular, but also various marginalised groups and suicide-bereaved people and suicide attempt survivors, who do not receive continuing treatment — and those who have been ‘burnt’ by the psychiatric system. There is some evidence that psychiatric — including compulsory — hospitalisation reduces suicide risk; however its hidden injuries have not been properly examined. The human rights message to doctors and others with powers of constraint: don’t admit, treat, seclude or restrain people against their will unless there is absolutely no less restrictive alternative. Explain decisions, work with patients and staff to maintain the patient’s control and to prevent hospital-induced trauma, explicitly inform patients of their rights and promote these, and actively support their decision-making wherever and as soon as possible.
Of equal concern with coercion, however, is abandonment. In conditions of structural and systematic neglect, many with severe mental disabilities no longer frequent asylums but prisons, which reinforce prejudice against those with mental disorder; or in parodies of liberty, drift outside institutional protection towards the fringes of society, homeless, destitute, disenfranchised, highly disabled, and without champions.
Human Rights Day 2013 – 10 December — marks twenty years since the Vienna Declaration and Programme of Action from the World Conference on Human Rights; and the establishment of the Office of the High Commissioner of Human Rights. As entitlements applying to everyone, and especially disadvantaged groups who require them to achieve their full potential, human rights have seen much implementation into common law since 1993, with enormous achievements in such domains as women’s rights, international law regarding human rights abuses, and the rights of many marginalized and/or disadvantaged groups. These latter have included indigenous people, lesbian, gay, bisexual and transgender people, migrants and refugees, trafficked people, contemporary slaves, migrant workers, child soldiers, older people, those with disabilities, and minorities in general. While the scope, feasibility and sometimes validity of rights are vigorously debated, governments that sign international human rights treaties participate in various recurrent reporting and review mechanisms. Arguably human rights are increasingly central to international relations.
Recently mental health has also enjoyed a new dignity in scholarship, international programs, mass media coverage and political debate. It has grown in prominence in the World Health Organisation and other international forums. The Movement for Global Mental Health (MGMH), which arose from a special 2007 series of articles in ‘The Lancet’ and from 20 years of research documenting the enormous health burden of mental disorders, not just in high income countries but in low- and middle-income countries, has called for scaling up treatments for mental disorders, protecting human rights, and increasing research in low- and middle-income countries. Since 2008, the trailblazing, inspiring WHO Mh-GAP program has undertaken this.
But these latter developments are very recent, and mental disorders are late emerging from the shadows. The inevitable conclusion of any review of mental health and human rights is that the struggle for human rights over the last two centuries has largely bypassed the accounts of those injured by coerced psychiatric treatments, and even more significantly in terms of scope and numbers, the neglects of those suffering with mental disorders.
One in four people will experience a mental disorder in their lifetime, and about one out of five will receive treatment. This is true not only in high income but also low and middle-income countries (the latter finding surprised those first noting it). The impact becomes profound when combined with poverty, mass trauma and social disruption, as in many poorer countries. Most sufferers can be successfully treated through primary and community mental health services; however, the poorest countries have no plan and spend very little on mental health (their prevalence of treatment is as low as 2%). Middle-income countries spend 80% of their mental health budgets on mental hospitals that serve only 7% of patients. Thus the most deprived have the least access; and resources are scarce, inequitable or inefficiently applied. For instance, providing services to mentally unwell children and adolescents can often prevent lifelong disabilities; the investment needed is modest (US$3-4 per capita), and yet with current average spending at US $0.30 per capita, the proportion of children receiving service is much lower than adults. Mental health is moreover frequently absent from health and social policy-making and research, and from flagship global health initiatives such as the Millennium Development Goals. This is despite depression reportedly leading world causes of disability, and the prediction that mental illnesses will contribute 25% of the world disease burden in 20 years’ time, making them the most important illness category — more than cancer or heart diseases.
Unfortunately, comparing and contrasting the disease burdens of physical and mental disorders can be hazardous. It can obscure relationships between physical and mental disorders, and risk entrenching opposition between physical and mental health sectors and alienating mental health from global efforts to improve health and reduce poverty. Just as mental disorders increase risk for communicable and non-communicable diseases and for accidental and intentional injury, so many health conditions increase the risk for mental disorder. Co-morbidity complicates engagement, diagnosis, therapy and prognosis. As MGMH proclaims, “There is no health without mental health”. Therefore in existing health care systems, delivery of mental health care must be strengthened and barriers to this overcome.
Nevertheless, funding for physical disorders is vastly greater than mental disorders, which are undeniably ignored, unnoticed or untreated by comparison. Consider global HIV/AIDS (World AIDS Day was 1st December). HIV/AIDS and its associated stigma has provoked a strong engagement between health, mental health and human rights communities and has generated a sustained international effort to address it. HIV/AIDS mortality has been declining (1.6 million in 2012), new infections have been falling (despite some recent worrying reports of increases among adolescents), people accessing treatment have greatly increased (9.7 million in 2012), and funding has been steadily increasing (US $18.9 billion in 2012). By contrast, consider suicide, also associated with stigma, which has attracted no such global campaign. It globally accounts for about one million deaths per annum, this figure substantially rose in recent decades due to increases among the young, and a very substantial proportion of those dying by suicide do not access services. Suicide, with which mental illness has a well established causal link, is but one cause of premature mortality among those with mental disorders, which is also caused by cardiovascular, respiratory and malignant diseases. Since the physical health needs of mental health patients are frequently disregarded, the life expectancy gap has not closed in the last 20 years even in affluent countries.
The truth is that until very recently mental health and people with mental illnesses have been ignored locally, nationally and globally — even though the international community has prioritized human rights — because stigma and discrimination are widespread and we continue to act as if those suffering with mental illness are of less worth than others. Many countries do not have or have very outdated mental health legislation that severely disadvantages people with mental disabilities. Various countries retain legislation that outlaws suicide, thus preventing help-seeking by suicidal people and suicide bereaved people, who also often report dismissive attitudes from health professionals and adverse experiences of hospitalization and emergency departments, which compromise their assessment and follow-up.
The tide is turning. Earlier this year, MGMH and the World Federation of Mental Health established A People’s Charter for Mental Health. In May 2013, the UN Secretary General approved a WHO Action Plan for Mental Health. There have been calls for mental health to be included as part of the Sustainable Development Goals and mental disorders as one of the five major non-communicable diseases, for mental health to be represented on all disaster emergency committees, an urgent UN Assembly Special Session on Mental Health, and for the appointment of a Special Envoy/Rapporteur for Mental Health. The WHO mh-GAP intervention guide provides vital information for primary and secondary health providers on diagnosing and treating mental illness. apologies have been suggested to those who have been abused or mistreated by psychiatric services.
On the legal front, the Convention on the Rights of Persons with Disabilities (CRPD) has adopted a social definition of disability, has recognized the principle of autonomy with support, and has signalled the change from welfare to rights. The International Day for People with Disabilities, 3 December, is appropriate to remember this major shift, and the enormous changes especially but not only from consumer-led groups. Organisations working in countless settings now endorse the reality of survival and recovery for people with mental disabilities and suicidal people. At the international level alone, along with WHO and MGMH, we note the crucial work of the peak World Federation for Mental Health, and also the World Network of Users and Survivors of Psychiatry, Global Initiative for Psychiatry, Disability Rights International, Mind Freedom International and the Mental Disability Advocacy Centre, to name but a few. Their national, regional and local counterparts are phenomenal. In Australia we have seen the flowering of high quality, diverse e-mental health sites and services, plentiful mental health commissions, some excellent rehabilitation programs (e.g. RichmondPRA), and even comedians (WISE Stand Up for Mental Health) who tour to break down shame attached to mental illness.
To take seriously the rights of those with mental disabilities is to confront the ancient stigma attached to mental disorders, treatments, patients, carers, and services. Yet the above account gives the lie to the belief that mental disorders happen to other people. They are everyone’s business. In a quest for recognition which embraces people from every conceivable walk of life, there is the insight that there is no health without mental health. Furthermore, in the evolution of the CRPD, it is people with disabilities who have affirmed that there is ‘Nothing About Us Without Us’. The CRPD teaches us all that disability is a part of the human experience, and part of our wholeness. To discover the rights of those of us with mental disabilities, will also be to discover respect for their experience of survival and their capacity to effectively illuminate what mental health is all about, for everyone.
Michael Dudley and Fran Gale, along with Derrick Silove, are co-editors of Mental Health and Human Rights, published by Oxford University Press.
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Image credits: Natalya Gorbanevskaya at the balcony of the library “Russian abroad”, in front of the bell of the Church of Saint Nicholas the Wonder-Worker on Bolvanovka Street © Dmitry Kuzmin via Wikimedia Commons; Prison Cell Block © Bob Jagendorf, Creative Commons License via Wikimedia Commons.