Existing Without Hope
Mental illness affects people around the world, transforming their lives into a continuous struggle for preservation of their dignity and human rights in societies that do not always understand them.
“All human beings are born free and equal in dignity and rights”
-The Universal Declaration of Human Rights
Throughout history, mental illness has been associated with factors like weakness of character or possession by demons. As a result, the mentally ill have been isolated, neglected, tortured and even burnt alive – their lives destroyed by stigma and taboo.
The progress in medical knowledge encouraged a scientific approach to mental health problems and resulted in a slow, but steady, change in attitude. Many people began to view mental disorders as illnesses akin to other diseases that required treatment, not condemnation; though many societies still continue to show disdain for the mentally ill, and their mental health services remain insufficient and ineffective.
Understanding mental disorders is a difficult task in terms of the dynamics of disease, and the heavy emotional and psychological toll it takes on family life. Care for the mentally disabled is a serious human rights issue because of its effect on societal harmony and stability and potential for exploitation and abuse. In many mental health facilities, rehabilitation is not always seen as the chief aim of treatment. Human rights violations against people with mental disorders occur in communities throughout the world – in mental health institutions, in the wider community, and at individual level.
The World Health Organization (WHO) strongly urges communities to ensure respect for human rights and dignity in all mental health facilities, and outside. According to WHO reports based on testimonies of the patients and their relatives, it has been observed that many patients face severe discrimination and endure appalling living conditions in the mental health facilities. The following are excerpts from some of the letters addressed to WHO:
1. “Among the professionals who dealt with my son’s psychological illness, I frequently encountered irritation and threats aimed at him (‘if you don’t shape up’ or ‘I’m really having a problem with you today’), as if his psychological problems were subject to his direct control. In the 15 months of cancer treatment that my son also received, I never heard a nurse or doctor express any anger or irritation with my son for the symptoms of his illness.”(Source: Weissman MM. A piece of my mind: stigma. JAMA, 2001, 285(3): 261-2.)
2. “I experienced homelessness at one stage coming out of the hospital. I had nowhere to go. I had no choice. My family at that point was struggling with their own view of my condition and there was no place in the family for me. If my family had been educated, taught how to help me, supported and helped, then my story would be very different. (Source: Stop exclusion – Dare to care. World Health Day brochure. Geneva, World Health Organization, 2001.)
3. “The conditions there are miserable… dirty patients; dishevelled and very skinny [patients] surrounded me asking me for some bread. As for the building, it is pitiful to look at: many broken glasses, walls without painting for many years …The toilets, totally out of order, without running water. Most of the time cooking is done with water caught from the rain.…”
The report goes even as far as to quote a health worker as saying, “Why are you fighting that much? This place is but the waste of society.”
(Source: Letter 78, original in French. Voices from the shadows: a selection of letters addressed to the World Health Organization 1994 – 2002. Geneva, World Health Organization, 2004.)
Investigators from Mental Disability Rights International have found that inmates of mental health facilities who tried to escape were given severe punishments such as confinement for hours in cold, bare rooms without clothes; while over-drugged, unkempt and neglected patients pleaded for provision of basic needs like a glass of water. (A report by Mental Disability Rights International, September 2004)
WHO sources give a depressing analysis of the situation of mental health management worldwide: almost 64% countries have been found to have no legislation regarding mental health, or at least one that is less then ten years old. About 30% of countries don’t have a separately allocated budget for mental health; 20% countries spend less than 1% of their health budget on mental health; 32% countries have no community care facilities and vast differences are observed in the number of psychiatrists available to the populations ranging between more than 10 per 100,000 to less than 1 per 300,000. In Pakistan, though the fiscal year 2006-7 has seen a significant increase in the health budget, only 1% is estimated to be spent on mental health.
Researchers have found that factors such as low income, low education and difficult marital and family relationships expose women to abuse and make them more vulnerable to mental disorders. According to WHO sources, the probability of developing anxiety and depression are higher among women as compared to men, and these findings are constant across a series of studies conducted in different setups. A study by World Bank (1993) that focused on disability from neuropsychiatry disorders among women found that up to 30% women were affected in the developing countries as compared to 12.6 % men.
Pakistan Association of Mental Health (PAMH) declares that of the estimated 44% Pakistanis suffering from clinical depression, the majority are women. In Pakistan, many of the plans working towards social uplifting of women’s health focus on their reproductive health and their psychological and emotional needs are generally not given due importance, as is the norm in patriarchal societies. Women as care-givers have multiple roles to play at home. The burden of responsibility for the household including efficient running of home and fulfilling the needs of immediate as well as of extended family members requires a lot of energy. This burden is further multiplied for working women who have no one to share the burden of domestic duties along with the demands of their job. A culture of suppression prevents women from finding healthy outlets to their frustrations. It is not surprising then that they succumb to nervous breakdowns.
A serious trend manifest in the behaviour of the mentally disturbed is a tendency for deliberate self-harm. According to WHO sources, mental disorders are associated with 90% of all suicide cases; the last 45 years have seen a global increase of suicide rates by 60% and about 1 million people died of suicide world wide in the year 2000. It is also among the top three leading causes of death of individuals aged 15-44 years. WHO finds that though traditionally suicide rates were highest among the male elderly, now the younger age-group mentioned above are at higher risk of suicide in a third of developing as well as developed countries, though reasons and methods vary.
In Pakistan women remain particularly vulnerable to suicide because of numerous factors including social and cultural pressures, domestic and sexual violence, and undiagnosed or untreated mental illnesses. Stigma and discrimination by society allow these mental health problems to go unchecked. The HRCP (Human Rights Commission of Pakistan) report for 2005-6 declares that total suicide and attempted suicide cases increased from 2,712 in 2005 to 3,919 in 2006. There were around 200 women suicide cases reported within the first six months of 2006 along with 181 cases of attempted suicide, most of the victims being under 30 years of age. A 2007 trend analysis report by the HRCP also found young married women to be at highest risk.
Attempted suicide is underreported because it is a criminal offence in Pakistan punishable by up to one year imprisonment, and many successful suicides are also reported as accidents due to stigma. Hence, actual figures elude statistical collection, posing a challenge to effective data gathering.
Effective treatment of mental disorders requires a multi-pronged and multi-tiered approach involving government and private sector, community health services, family support groups and access to individual counseling facilities. Increasing awareness about the rights of the mentally ill, countering stigma and discrimination, training of primary health professionals, improving standards in psychiatric institutions, restriction of access to common methods of personal harm, etc. may be some of the strategies applied in this regard.
People suffering from mental disorders are either not aware of their rights or are not in a position to claim them. It is thus the collective responsibility of communities, institutions and governments to ensure that their dignity and human rights are upheld, and they are helped to resume their normal lives again.
Note: This article was originally published in “SouthAsia” magazine.
Category: Columns, Tahera Express
This is one educational article Tahera, thank you for sharing it here.
I remember growing up around a neighboring family who had an individual who was mentally ill. As difficult as it was to manage, credit to that family for taking care of that person with utomost affection. I used to wonder how do they manage all this?
Generally such people are considered crazy or posessed as your said; but its about time our general perception of such people change.
Thank you for brining such important matter to attention.
Thanks, Amir.
What I learned during the course of my research on this topic really appalled me. It is truly sad how the weak are exploited and abused in societies across the globe.
Having a mentally-ill person in the family is like living with an alcoholic: you know they are sick, you know they are powerless to fight the illness, you struggle between your love for them and the pain they cause you every time they have a crisis. Except that families of alcoholics have many more networks that offer moral support. Been there… thanks for writing this article!
Thanks for your comments, Liana.
Absolutely agree with you – and this I haven’t touched upon in my article, so thanks for bringing it up – that family and loved ones suffer enormously torn between love, helplessness and sense of duty. Instead of support, they have to cope with the added burden of stigma/censure from society.
Awareness is the first step towards improvement. Each one of us should try and contribute in some way, however small, to make a difference in the lives of the affected individuals.
Nicely researched. Compact, correctly referenced, does what it says on the box. Which is about the best you can hope for, really!
Thanks, Chris.