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A CALL TO OPEN THE DOOR A psychiatric disability perspective on 'rethinking care'

Mary O'Hagan
World Network of Users and Survivors of Psychiatry(WNUSP)


Once, on a lush, prolific island surrounded by a deep unknown sea, a family lived in a large old house. The family devoted their lives to keeping their house a safe and comfortable place to live. They worked together harmoniously, blending their talents and skills. But gradually one of the family members, who was a painter, changed. She went off on her own and painted strange, incoherent pictures, she and the others could not understand. Everyone felt frightened and helpless.

After a while her family said to her "You have got to go. Your paintings don't belong to this house any more. Our house is no longer safe and comfortable for us." They told the caretaker to lock the woman in the junk shed at the bottom of the property, on the slippery margin between the land and the sea. In the junk shed the woman suffered more terribly than ever, until she made friends with the sea who told her the meaning of her art. Then she started to long for her paints and brushes again. So she asked the caretaker to tell her family that she wanted to come home.

But her family still did not trust her to keep their house in order. They sent a message to the woman saying she could live on the back porch where they would provide her with food and blankets. But life on the back porch wasn't much better than in the junk shed. The woman still was not allowed her paints and brushes and the loss of her art set off a terrible screaming inside her. The caretaker saw her pain and finally convinced her family to open the door and let her live inside the house again.

The woman was overjoyed to be in the house again. She seized her paints and brushes and painted while the others looked on. At first the family still couldn't understand the woman's paintings, but after a while they saw the power of her work. "Where did you learn to paint like this?" they asked her. She replied "When I was in the junk shed I made friends with the sea who told me the meaning of my art. But I didn't know I could paint like this until I picked up the tools I have been denied for so long." Her family realised their mistake and from that time on they gave her a room of her own to decorate and live in as she pleased. And they all lived together in their own rooms under the same roof, happily ever after.


A brief history

People with psychiatric disabilities have a long history of segregation from their communities. In western countries, before the institutional era, we were confined to attics or poor houses, banished to a vagrant existence on the roadside or hunted and tortured as witches. Over the last 200 years we have been sent to large institutions, well outside the town boundaries where we have often stayed for the rest of our lives. At their best, the institutions offered an artificial community and paternalistic control and care to people who had lost their right to belong to their natural communities. At their worst, they subjected people to abuse, neglect and torturous treatments.

In the wealthy western countries most of the institutions are closing but elsewhere they remain. The segregation of the institutional era is passing but people with psychiatric disabilities have serious reservations about what is taking its place.

The community care era was ushered in by economic constraints, new treatments that 'normalised' people's behaviour, and a growing awareness of human rights. However, community care has largely failed to deliver people back to their communities. Often states have not provided enough resources for community care. Many mental health services have continued to operate in isolation from communities and to treat people with psychiatric disabilities with similar paternalistic control to the institutions. Some people leaving the institutions have ended up on the streets or in prisons.

People with psychiatric disabilities want to be freed from the junk shed but we do not want to end up on the back porch. We want a key to the door and a room inside the house.

People's experiences

I write this paper as a privileged person from a wealthy and democratic country who has never known abject poverty, warfare or oppressive dictatorships. But I do know the experience of psychiatric disability and I have met others with psychiatric disabilities from many parts of the world. Despite our different cultures, ethnic backgrounds and beliefs, our stories are essentially the same - they are the stories of exiled people who are struggling to find their way home.

People with psychiatric disabilities all over the world talk of their suffering during episodes of mental distress, but worse than that, they talk of their shame, and the rejection they experience from others for something they did not choose.

A large number of people with psychiatric disabilities talk of the horror of being locked up in institutions and being subjected to forced treatment, physical and sexual abuse, and neglect. In some countries people are trapped in institutions for years with no legal processes to help get them out. Some people say they were put in institutions to hide their family's shame or to silence their political views.

Millions of people have suffered serious harm from psychiatric treatments. Many people suffer from Tardive Dyskinesia - a permanently disfiguring side-effect of anti-psychotic drugs. Some people suffer permanent memory loss from electric shock treatment. Occasionally people are given lobotomies, a brain operation which permanently flattens their personalities.

A growing number of people talk about not being able to use community mental health services when they need them, because there aren't enough services to go around, or because the services are too controlling, or because the assistance they provide isn't what people want.

Millions of people with psychiatric disabilities live in degrading institutions, houses or hostels where they have no say, in dilapidated boarding houses, in prisons or on the street. Those who attempt to live in respectable neighbourhoods often get the message that they are not welcome there.

Many people with psychiatric disabilities, who want to, never find employment on the open market. They are subjected to sheltered workshops where they do repetitive work for a pittance. Or they spend their lives in living rooms and day centres without any opportunity to contribute to their communities.

All over the world people with psychiatric disabilities are joining the underclass of people on the back porch of their communities, where they are condemned to the intolerable multiple stresses of poverty, unemployment, loss of hope, inadequate housing, isolation and exploitation.

But it doesn't have to be this way. These things would never happen in a world where people with psychiatric disabilities were given the treatment, care and support they want, and equal opportunities to their fellow citizens.


There are strong, sometimes overwhelming forces that keep the door locked to people with psychiatric disabilities. These forces involve the way people think as well as their behaviour. Everyone potentially shares some responsibility for keeping the door locked to people with psychiatric disabilities, including people with psychiatric disabilities themselves.

The conceptualisation of mental illness and disability is too narrow and doesn't facilitate recovery.

There have been many explanations for mental illness throughout history and across the different cultures of the world, but in many countries the dominant explanation is that mental illness is biological and responds best to medical treatments. Some people with psychiatric disabilities say they have benefited from medical diagnosis and treatments but most prefer more holistic explanations that take into account such things as people's life experiences, social inequality, and spiritual matters.

The debate on the nature of mental illness and disability is more than just an interesting intellectual exercise. A society's underlying conceptualisations about mental illness and disability will profoundly influence the way services are delivered and whether the door to our communities is open or shut to us.

Disability and mental illness are judgements, not facts

Mental health professionals and interested lay people tend to view mental illness and disability as inherent facts about individuals rather than as socially constructed judgements. It is easy to see that having unusual beliefs or hearing voices that others cannot hear are factual occurrences. But attaching the label of mental illness or disability to these facts is purely a judgement. The voices and visions of saints and shamans have made a huge positive contribution to many cultures. How different their lives would have been if they had been judged to have a mental illness instead of a spiritual gift.

Disability and mental illness have no real meaning outside the context of our social relationships and how we understand things like productivity, communication, attractiveness, independence and status. States of being that don't fit society's definition of what is productive, attractive, independent and so on, are likely to be thrown into the disability basket.

The relativity and reversibility of the concept of disability was well illustrated once in a brilliant television portrayal of a 'wheelchair republic' which was designed and controlled by people in wheelchairs. All the ceilings were lowered to accommodate seated people. Upstanding people had to stumble and crawl to get around, and had to wear crash helmets to protect them from knocking into the ceiling. The programme turned the tables and showed how the people in wheelchairs discriminated against the upstanding people who lived in a world that literally and figuratively cramped their opportunities to be productive, independent and valued members of the community.

Perhaps it would be better for people with psychiatric disabilities to live in a world where no one was seen as disabled or mentally ill but simply had minority requirements that other citizens accommodated as a matter of course. Disability would merely indicate the different requirements of certain minorities to live a fulfilling life, rather than all the baggage and labels that say we are helpless, useless, unattractive and needy.

Unfortunately, when disability and mental illness are viewed as inherent facts about individuals, it places these concepts beyond questioning. It also limits the discourse or self-examination by society, on how it may contribute to the causes of mental illness and disability, and how it might perpetuate them through harmful treatments, coercion, and discrimination.

The medical model justifies coercion

The medical model has a long association with coercive practices within the mental health system. It tends to view people with psychiatric disabilities as helpless victims of forces within them that rob them of their competence and rationality. The medical model tends to justify coercion and paternalistic practices on the grounds that these practices will restore people to competence and rationality, and liberate them from their own pathology. Psychosocial models cannot so easily justify coercion and paternalism, especially those which emphasise free-will and personal and social responsibility.

Recovery is taken over by experts

The medical model supports the use of powerful technology such as drugs and electric shock treatment. Only experts in this technology are empowered to administer these treatments which puts people with psychiatric disabilities in a very passive role. Most other therapies used by people with psychiatric disabilities such as psychotherapy, herbal remedies or self-help groups require them to be more actively involved.

Pessimism in mental health services is rife

The preoccupation with diagnosis and prognosis is most pronounced in those who adhere closely to the medical model. They believe that the so called major mental illnesses have a fairly pre-determined course. This tends to make people with psychiatric disabilities feel they are condemned to recurrences or deterioration in their condition, which can in fact be quite wrong. The medical model, especially when it is not combined with other explanations and therapies, encourages people with psychiatric disabilities to sit and wait for a terrible fate which they have no power to change.

People with psychiatric disabilities are discriminated against

Discrimination is the most painful, widely felt and insidious problems for people with psychiatric disabilities.

Discrimination takes many forms. It may mean that we are the subject of ridicule, harassment and abuse. Or we may be simply forgotten or ignored. We are likely to be feared and avoided because of our perceived violence, dishonesty and unpredictable behaviour. Our expressions of anger and pain can be dismissed by others as symptoms of our illness. We are sometimes subjected to excessive pity and the belief that our lives are sad and have little value. We are often told we will never get better. We know that if we talk about our experience of mental illness or distress we may lose our friends or be denied the house or job we want.

Discrimination against people with psychiatric disabilities can be as subtle as the look in someone's eye or as blatant as the murder of people with mental illness by the Nazis.

People with psychiatric disabilities can experience discrimination in any interaction they have with any other human being. These people may be their families, neighbours, employers, the police, judges, health professionals, the clergy, government officials, voluntary agencies, other people with mental illness, landlords, bank managers, insurance agents, politicians, journalists, friends, partners, immigration officials, workmates, lawyers or sports associates.

And people with psychiatric disabilities, in painful collusion with others who discriminate, often see themselves as others see them.

Discrimination by the state

It is the role of the state to create the conditions where all citizens have the opportunity to lead fulfilling lives and to contribute to their communities. States vary on how they do this. In many countries the state both funds and provides services for people with psychiatric disabilities. But there is a trend in some western countries for the state to pull out of provision and to fund communities and non-government organisations to provide for the needs of their people.

States have discriminated against people with psychiatric disabilities in several ways. States have been responsible for the chronic under-funding of services to assist people with psychiatric disabilities. Some people with psychiatric disabilities believe the state discriminates through empowering mental health services to forcibly treat and detain some people with mental illness. There is a growing trend for the state to impose compulsory treatment orders on people living outside institutions. States have also done too little to stop communities from excluding people with psychiatric disabilities, through the absence of legislation and policy that give us equal opportunities with other citizens to live in decent housing, to work, and to have an adequate income.

Discrimination by mental health services

Mental health services can also discriminate against people who use the services. They do this through coercive and paternalistic practices, failure to involve us in decision making, and failure to deliver the services we really want.

Coercive and paternalistic practices are not just features of life in institutions. Unfortunately these practices remain alive and well in many community based mental health services. Clinical services can decide what treatments we have, what information to give about them and they can harass us in our homes with assertive community treatment programmes. Accommodation services can decide where we live, who we live with, what time we go to bed and what we eat. Vocational services can decide what we do during the day and if we are ready for work or not. Other rehabilitation services may decide what we do with our money, what life-skills we lack, or where we go shopping.

Many services still assume they know how to provide a good service for people with psychiatric disabilities without even asking us. The people using those services often have no power to change the services, or go to other services. Many mental health services continue to treat us without respect, equality and protection of our rights, especially our right to informed consent.

Discrimination by communities

Communities actively discriminate against people with psychiatric disabilities in many ways - when neighbours say they don't want us to live in their street, when employers won't employ us, when our workmates tease us for having a mental illness, when people joke about us, or when our friends desert us.

But communities also passively discriminate against people with psychiatric disabilities by abdicating too much responsibility for our lives, often to the state. People require specialist services when their communities no longer have the ability or the will to provide them with the things they need. All communities recognise that most people don't have the ability to do some specialised tasks such as surgery, plumbing or computer programming. But communities don't always demonstrate they have the will to see to the ordinary needs of all citizens for housing, income, work and family life. With the exception of specialised treatments, such as drugs for mental health problems, the ability in our communities is there but the will is not.

When people with psychiatric disabilities need a specialist service for things like housing, income, and work, our communities have abdicated their responsibility for maintaining our ordinary needs. The sad reality is that no specialist service can cater for these ordinary universal needs as well as willing friends, peers, families, clubs, community groups, neighbourhoods or business communities.

People with psychiatric disabilities continue to live in ghettos, often run by the state, not just behind the high walls of institutions but also in community based service networks where all the people they know are other service users or people who are paid to be there.

People with psychiatric disabilities are seen as victims who are unable take responsibility for their own lives

People who are regarded as helpless, who are controlled by services, and who are excluded from their communities often find it enormously difficult to discover, develop and use their own personal resources. Yet people with psychiatric disabilities who have regained their lives, often say that using their strengths and abilities to take responsibility for themselves was the most important factor in their recovery.

Too many people with psychiatric disabilities sit in mental health services year after year. They are often over-medicated and under-motivated. Their sense of personal development died the day they were given a diagnosis or told they would never get better. Their self-respect has been shattered by degrading treatment and discrimination. They have lost hope and the belief that could make a better life for themselves. This is a tragic waste of human potential.

It is not just the state, mental health services or communities that perceive us as victims. Individuals with psychiatric disabilities often believe this of themselves. The psychiatric survivor / user movement, and others who advocate for our rights and inclusion, can also inadvertently contribute to our victimhood. Human rights activists and the survivor / user movement have contributed enormously to our understanding of the oppression and discrimination of people with psychiatric disabilities. But sometimes we have stayed stuck in our analysis of our powerlessness and in the powerless roles we have grown so accustomed to. As people struggling to emerge from oppression we do not always recognise what power we do have to change ourselves or the people and systems around us. We also hold a key to the door.


The psychiatric survivor / user movement

Some brave individuals with psychiatric disabilities have stood up for their rights throughout the last two centuries, but the psychiatric survivor / user movement did not begin to organise until the early 1970s. The movement started in Europe and North America. Since then it has spread to other western democracies, the former communist countries of Eastern Europe, southern Africa, Japan, as well as Central and South America. Like the feminist, civil rights, gay, indigenous and disability movements, the survivor movement is based on the principle of self-determination. We believe that people with psychiatric disabilities have suffered too much coercion by the mental health system and exclusion by our communities. People with psychiatric disabilities must have the power and resources to determine their own lives.

The survivor / user movement works on two main fronts - self-help and political action. In self-help we aim to change ourselves and recover from our experiences. In political action we aim to change the people and systems that affect our well-being.

It is not uncommon in some countries for people with psychiatric disabilities to run their own services and support networks. These may be drop-ins, crisis houses, arts projects, housing projects or small businesses. Services run by people with psychiatric disabilities usually have a strong commitment to the full participation of people using the service and to honouring their rights. Self-help initiatives provide valuable clues on how we want all our services to be.

Some groups within the user movement have campaigned against forced treatment since the movement started. Forced treatment has not been outlawed anywhere in the world, but in many countries it has become more difficult for the state to detain or treat people against their will. However, there are worrying signs in parts of Europe and North America that more people with psychiatric disabilities will be subjected to compulsory treatment in the community. The user movement has also campaigned for the closure of institutions, a broader range of treatments and supports than those offered by most mental health services, and for people with psychiatric disabilities to have equal opportunities to other citizens.

People with psychiatric disabilities are also working from within the mental health system to develop more responsive services. In many countries we now advise governments on policy, take part in funding decisions, and participate in the planning, delivery and evaluation of services. As individual service users we are more likely to understand the controversy that surrounds the causes of mental illness, seek different options for our treatment and support, know our rights, and question decisions made about us by service providers, than at any other time in history.

Universal human rights

The Universal Declaration of Human Rights is now 50 years old. It was developed in response to the horrific human rights atrocities committed by Nazi Germany. The Declaration marks the beginning of an era where all countries in the world are expected to protect the human rights of all their citizens. Many other rights statements, that build on the Declaration have come out of the United Nations since then. They are all as relevant to people with psychiatric disabilities as they are to other citizens. The are two statements that most specifically address the rights of people with psychiatric disabilities.

The Standard Rules on the Equalization of Opportunities for People with Disabilities The Rules assert that all states are responsible for removing obstacles to the equal participation of people with disabilities in the areas of:

  • access to the physical environment, information and communication
  • education
  • employment
  • income maintenance and social security
  • family life, sexual relationships and parenthood
  • cultural activities
  • recreation and sports
  • religion

The Rules also state that people with disabilities need adequate care and support as preconditions for accessing equal opportunities, and that they must participate at all levels of policy development and service provision. It is considered that all states fall short of fully implementing the Rules.

The UN Principles on the Protection of Persons with Mental Illness and for the Improvement of Mental Health Care

This document focuses on the right to treatment and services but unfortunately does not offer any guidance on the protection of the rights of people to refuse treatment. This is a glaring omission according to many people in the survivor / user movement around the world.

Services that show us through the door

Despite the poor performance of many services, some mental health services do assist us greatly to regain our lives. These service have various features in common. These are the services we want.

We want access to services that respond to our stated needs whoever we are, and wherever we are, and whenever we need them.

>We want services which at the very least will do us no harm

All the treatments and supports services offer people must give the most possible benefits and the least possible adverse effects.

We want more ways to understand and deal with our mental distress than those offered by the medical model

Mental health services are still dominated by biological explanations and treatments. People with psychiatric disabilities often believe there are many explanations for their mental distress and many types of treatment and support that might help them, such as natural healing, psychotherapy, education for recovery and assistance to find work, housing and community contacts.

We want less pills and more assistance to regain the social and material opportunities we have lost

Services need to help reduce our mental distress or unwanted features of mental illness, but they need to put as much effort into assisting people to counter isolation, poverty, unemployment, discrimination and anything else we may have lost in the wake of our mental distress or illness.

We want voluntary not coercive services

Some of us believe that forced treatment and detention are human rights violations which can never be justified. For those of us who have lost our rights to full autonomy, mental health services must take place in the least restrictive setting and use the least possible coercion and restraint for the least amount of time. To avoid forced treatment we want to determine what happens to us in a crisis through the use of advance directives or crisis planning.

We want the power to choose the services we want and to change the ones that aren't working for us

Mental health services must offer the most possible autonomy and choice to people with psychiatric disabilities about our treatment and the support we need for our recovery. Services must involve service users as equals in all decisions made within the service that affect our lives. If we are unhappy with the service, we need a fair and easy process for making a complaint and ensuring they get better service in the future.

We want the skills and resources to run our own services and other opportunities to use our competence

As individuals we need to take an active part in decisions about their treatment and support. As a collective we must be involved in the planning and evaluation of services at all levels. States must support the user movement to develop support networks and user run services. There should be no barriers to people with psychiatric disabilities working in mental health services.

We want a way out of mental health services

Mental health services should never try to replace natural communities - they are there to carry out specialist tasks and roles the rest of the community is unable or unwilling to perform. People with psychiatric disabilities need skills and encouragement to reduce their dependence on mental health services. Services need to ensure we have education on mental illness and health, treatments, crisis planning and prevention, maintaining a healthy lifestyle, countering discrimination, rights and self-advocacy, using support networks and using community resources.

Communities that welcome us in

Communities, with the backing of the state must be much more active in ensuring the rights and welfare of people with psychiatric disabilities.

We want the same rights, responsibilities and opportunities as other citizens

People with psychiatric disabilities need their rights protected by legislation. Governments need to ensure that we have equal opportunities to other citizens. No country should deny us education, work, income support, goods and services, housing or the ability to belong to a neighbourhood or a family. Families, communities, health and welfare agencies must support us, or at the very least, ensure they do nothing to impede our participation in our communities. The people in our communities whose lives and decisions have an impact on us, need to act towards people with psychiatric disabilities in a spirit of respect, equality and inclusion.

We want equal access to education and employment

The knowledge that we have a psychiatric disability should never deter employers or educators from taking us on if we are otherwise qualified. Once we are in educational settings or workplaces, some of us need reasonable accommodations such as flexible scheduling and sick leave, or additional supervision and support. If possible governments need to compensate employers and educators if they use extra resources to make reasonable accommodations.

We want an adequate income

Employment is the best route to securing an adequate income but if this is not possible governments should provide enough income for people to meet their basic human needs and any other needs arising from their disabilities. In some countries income support from the government acts as a disincentive for people to work who fear they will lose their financial security if they return to work or that working will earn them no extra income. Governments need to find creative solutions to this problem.

We want reasonable housing

We want to live in a place we can call home, not institutions or on the street. We want homes that are comfortable and shelter us from the weather. We want to choose where we live without fear of objections or hostility from our neighbours.

We want to belong to a family

People with psychiatric disabilities want the the support and opportunity to make friends, establish relationships and become parents without fear of losing custody of our children.


People with psychiatric disabilities, in all corners of the world, live in the junk sheds and the back porches of their communities. In recent times we have begun to knock on the door to our communities and demand that it is opened to us.

Governments and mental health services have to acknowledge the uncomfortable truth that the 'care' of people with psychiatric disabilities often supports the practices of paternalism, coercion, discrimination and exclusion. As states, mental health services and communities enter the 21st century, their attempts at 'rethinking care' must do away with these practices. Instead, 'care' must be concerned with standing alongside people with disabilities to assist us, on our terms, to open the door to freedom, inclusion and a valued place in our communities.

Secretariat: Klingenberg 15, 2.th, DK-5000 Odense C
Tel +45 66 19 45 11
e-mail: admin@wnusp.org