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Urban Suffering Studies Center

 

 

Urban Mental Health initiatives in India

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Murthy Srinivasa

 


Introduction

The World Health Organization (WHO) recognizes mental health as an important component of health. WHO gave importance to mental health throughout the year 2001, in the form of designating mental health as the theme for the World Health Day on April 7,2001 and the subject of the World Health report 2001 to be Mental Health: New Understanding and New Hope. During the recent decades, there is new understanding about mental health and mental disorders that make it possible to offer new hope to people suffering from mental disorders by initiating mental health programs. Mental disorders are common and they are a major source of burden to individuals, families and communities. Persons with mental disorders and their families experience stigma and discrimination arising from lack of knowledge, inadequate and inappropriate services and outdated legislation. In order to change the situation, WHO recommended that mental health should receive greater priority in public health programs, including increasing funding allocation. Programs for public education to fight stigma and discrimination and to include promotion of mental health through schools and social institutions should be a regular part of health programs. Mental health care should be community based and this should be achieved by integrating mental health care in general health services and building community care facilities. Consumers, families and community should be active partners in the development of policies, programs and legislation. All human resources should be utilized for mental health activities. Appropriate legislation should be enacted to ensure human rights of the mentally ill persons. These measures not only will ensure a better quality of life for the mentally ill persons, but also decrease the burden on the families and society and enhance social capital. Professionals, planners and the public can address these challenges and seize the opportunity of matching knowledge with actions for mental health care.

This paper highlights:1) the importance of urban mental health; 2) presents a brief review of recent mental health care initiatives in India;3) shares illustrative examples of mental health innovations in urban mental health care from different parts of India. The paper concludes with professionals role in initiatives for urban mental health.

Urban Life and Mental Health

Life in urban areas have both advantages and disadvantages for mental health. The advantages in urban life that can promote mental health are, greater freedom for the individuals, lack of traditional barriers of caste, gender, class etc, wider employment opportunities, wider range of education and health services . However there are special challenges of urban life that can have negative impact on mental health like overcrowding, industrialization, pollution, life of migrancy without the social supports, high exposure to noise, feelings of anomie, lack of community support, disadvantages of living in slums with minimal services and high exposure to drug abuse and crime. These factors require that the organisation of mental health care requires new approaches to address the needs.

Recent Mental Health initiatives in India

Government of India felt the necessity of evolving a plan of action aiming at the mental health component of the National Health Programme and for this an Expert Group was formed in 1980.This resulted in the first draft of National Mental Health Programme for the country. This was presented at a "Workshop" of mental health experts in 1981. Following the discussion, the draft was revised and the new draft was presented at the second workshop in 1982 to a group of experts belonging not only to psychiatry and medical profession but also to education, administration, law, social welfare.

The NMHP has the following objectives: 1) to ensure availability and accessibility of minimum mental health care for all in the foreseeable future, particularly to the most vulnerable and under-privileged sections of population; 2) to encourage application of mental health knowledge in general health care and in social development; 3) to promote community participation in the mental health service development and to stimulate efforts towards self-help in the community. Approaches to the statement of programme objectives were diffusion of mental health skills to the periphery of the health service system; appropriate appointment of tasks in mental health care; integration of basic mental health care into general health services; linkage to community development and mental health care. The service component will include three sub-programmes - treatment, rehabilitation, and prevention.

Urban Mental Health Innovations
The following section presents some of the urban mental health initiatives. They do not cover all the initiatives and the ones included are chosen for their representation of a specific approach. A more comprehensive coverage can be found in the book Mental Health By the People ( Srinivasa Murthy,2006).

 


During the first 10 years of the NMHP, the initial small scale models of care were systematically evaluated and contributed to the development of a district level model in the Bellary District of Karnataka. During the next 15 years, the district mental health model called the district mental health programme (DMHP) was initially extended to 27 districts and later on to 100 districts. Thus within a relatively short time the basic approach to integrate mental health with general health care was taken to a larger coverage of the population.

During the last 25 years, a number of other initiatives, specially by the voluntary organizations, have enlarged both the scope of mental health care as well as the care providers. These initiatives have included setting up of day care centres, half-way homes, long-stay homes, suicide prevention centres, school mental health programmes, disaster mental health care, community based programmes for the care of the mentally retarded, elderly persons, persons with dementia, substance abuse. One very India specific development of significance is the increasing role played by the family members both for self-help, mutual support and towards advocacy). This development, to a large extent, has occurred with the partnership with the professionals, unlike in some of the western countries where there is this lack of cooperation between patients, families and professionals.


Homeless mentally ill in Bangalore

It is a very common sight to see scores of people sleeping on the footpaths and corridors of small businesses in the major cities of India. It is hard to imagine how these unfortunate human beings manage their lives with changing climates and adversities. It is very difficult to estimate the number of homeless people in a cities since there is no systematic way to establish the number.

In India, the homeless people living in the streets are covered by the Prevention of Beggary Act 1975. As part of this Act, people begging for alms are arrested and remanded to judicial custody for a period extending to one year. Administrators and policy makers have not fully examined the life situation of people which has forced some to such a predicament. There is lack of attention to the mental health needs of the homeless population. The Prevention of Beggary Act, 1975 when implemented is used to identify people who are begging with a sole purpose of rehabilitating such persons. As part of this initiative, persons who begging are given an indirect message that they should consider alternatives to begging. While the Act can bring a large number of people into care, interventions are not carried out in a scientific manner. Most often resources at the Relief and Rehabilitation Centres (RRC), both material and manpower is grossly inadequate to meet all their needs. It is quite possible for the system to keep homeless individuals in custody and do nothing about addressing their needs because of lack of resources and non existent protocols for care. Therefore mere Act alone is not sufficient to rehabilitate the homeless; a host of systematic interventions implemented in a humane manner is critical. There is an urgent need for the departments of social welfare, urban development, police and health to work in coordination, to identify the homeless persons and provide comprehensive care. Housing, health care, vocational training, deaddiction services and mental health care are some of the important needs.

Recognising the absence of mental health services for the persons with mental illness, Dr. Kishore Kumar, psychiatrist from the National Institute of Mental Health and Neuro Sciences, Bangalore initiated a number of steps to address the mental health needs of the RRC. The facility has over 500 residents and about 30% of them were suffering from mental disorders. About ten years back when the mental health services were started, there were no mental health care at the RRC. The initiatives taken were the following: 1) visiting the RRC by the mental health team once a week; 2) including assessment of mental health of the residents as part of their initial evaluation; 3) providing psychiatric treatment; 4) training of the staff to care for the mentally ill by humane measures rather than control and punishment; 5) training of the health workers and doctors in basic mental health care; 6) encouraging the residents to get involved in the vocational training activities at the centre; 7) tracing of the families of the residents and reuniting them with the families; 8) training for the police personnel to be sensitive to the homeless persons having mental disorders; 9) increasing the funds for psychiatric medicines; 10) involving voluntary personnel - both professionals and lay volunteers - to provide their support and 11) sensitizing the administration to the mental health needs of the homeless persons in the city.

As a result, the situation in the RRC has changed dramatically. A significant number of residents have been reunited with their families. There is routine mental health care for all the residents. There is greater acceptance of the need for mental health service by the authorities.


Homeless mentally ill in Chennai
Caring for women with mental illness and homelesss presents special challenges. A pioneering effort in addressing this need is from the cities of Chennai and Vellore.

The Banyan initiative began on August 27, 1993. The founders, Ms. G. Vandana and Ms. Vaishnavi, were just out of college; not trained doctors but social workers. "There existed a very dire need and we, exposed to it in college, decided that we should do something," for rehabilitatation of homeless women with mental illness found in the streets of Chennai.
The goals of The Banyan are clear and give precise directions for its functioning. These are: 1) improving and sustaining the quality of services ; 2) taking steps towards setting standards in quality and models for quality service in the sector of mental health care for the homeless; 3) improving access to care and other services within the realm of interventions ; 4) taking steps towards creating awareness and action at the Macro level with the government, NGOs and other stakeholders for improving access to care; 5) precipitate an increase in stakeholders in the sector by getting more individuals, NGOs, clients, care givers, funding organizations, government, police, media and judiciary involved; 6) work in partnership with the government (Tamil Nadu) to initiate interventions that change government's programmatic approach in both institutional and community based services and 7) work within government systems and induce significant changes that can be replicated at an all India level for larger sectoral benefit.
A typical admission to The Banyan happens like this: The police receive a call about a wandering, mentally-ill person through the recently established Mental Health Helpline, a collaborative initiative with The Institute of Mental Health, Chennai and a part of the Police Control Room manned by The Banyan's social worker. Sometimes, the organisation receives a call directly from a member of the public. The Banyan requests the caller to keep a watch on the person and sends two of its staff in its van. At the spot, even as a few people gather around the woman, the staff try to persuade the woman to get into the vehicle. Often, this is a difficult and long drawn process. The staff, including the driver, are not trained social workers; they are people with minimal education, who have been trained by The Banyan to handle situations like this. They would also have watched at least a dozen acts of picking up a mentally-ill woman from the street. More often than not, talking alone does not help. That is where the police come in. Over the years, The Banyan staff and the police have established a rapport to the extent that they respond to these calls with sensitivity and with minimal time lag. Once the operation is complete, The Banyan staff distributes pamphlets to the onlookers that detail activities of The Banyan.
Once at The Banyan, a care giver - a woman with limited education but a trained Banyan hand - a qualified social worker and a doctor/paramedic conducts a through physical examination of the woman. Once this is done, the woman is washed and is treated for any external injuries. No psychiatric evaluation is done at this stage and the woman is in contact with only a couple of social workers and other patients who may have come in at around the same time.
Volunteers are an important part of The Banyan activities. Volunteers are ordinary and extraordinary people who have crossed the threshold of their immediate concerns and worries and look at issues beyond power failures, garbage accumulation and traffic snarls. These are people who get involved in mental health issues.
There is always this first question that people ask: Why should anyone, other than a psychiatrist, a clinical psychologist or a specially trained para-medic "deal" with a mentally-ill person? We need to understand two basic facts here. One, there are not enough qualified people, especially in rural settings and peri-urban areas. Second, since The Banyan believes in reuniting the mentally-ill who have been separated from their families, there are a host of issues involved apart from the obvious psychiatric issues. And, this new strategy of getting the family involved also creates tremendous opportunities for ‘non-professionals' to be involved in a whole gamut of the process of care and rehabilitation of the mentally-ill.
Volunteers go through an orientation-cum-training programme which acclimatizes them with the organization and also puts them in close contact with the persons who run The Banyan on a day-to-day basis. The Banyan routinely appeals to people in Chennai and elsewhere to join in as volunteers through the media and its various outreach programmes and a few respond to this call. All those who volunteer are requested to visit the Banyan at their convenience and a staff member details them about the organisation. The volunteers are also requested to detail their area of expertise and also if they would be able to make available their skill-sets to The Banyan. Details of their availability, the amount of time they would be able to spare for the Banyan are all asked and noted. A quick tour is also organised across the facilities and an interaction with a few of the residents is also arranged.
The basic Banyan approach to finding the resources to care for the mentally-ill has been businesslike. You could ask a donor for a certain amount of money citing a reason as vague as ‘operations.' But make it more specific and cut it down to components and the donor base increases manifold. Like for instance, the rehab bill that we discussed earlier. Or The Banyan's Special Occasion Scheme (SOS). The SOS brings meals for the residents. It is packaged in such a way as to enable people to gift food on a day that is considered auspicious for them (birth/death of their loved ones, anniversaries, etc.). The Banyan's business approach makes it believe that fund raising entertainment events are just that - fun evenings and not a time for people to suffer a slipshod charity. Hence, professionalism is the watchword in everything that The Banyan does. The Banyan's blockbuster entertainment evening Netru Indru Naalai is a trendsetter in large format live entertainment in the country and the Basant Utsav, The Banyan's evening of live music under the stars in Dakshina Chitra is an event looked forward to by music lovers and the city's die-hard romantics. In its initial days The Banyan also has resorted to the strategy of shocking society out of its indifference towards the mentally ill. The Banyan, supported by a finance firm, ran a series of eye-catching, screaming billboard campaign in the city of Chennai. The response was tremendous: The Banyan received 50 calls on an average each day. That meant at least five visits by people who have nothing to do with the illness each day. In the final analysis, it added at least one committed volunteer each week. A few of those people remain even today, more than a decade after the campaign. All of Banyan's strategies have grown from the multiplying needs of the residents. Whether it is the need for a dial 100 system, huge fund raisers, talking to NGOs in remote parts of the country - all have been necessitated by emerging needs. And The Banyan grows only because it responds to these needs tapping a variety of people from across various strata of society.

The Banyan's reach and range of activities for the mentally ill and the large body of people that it has involved at one level or the other, is reason enough to conclude that mental health is not merely the business of qualified psychiatrists or clinical psychologists. The need of the hour is out of the box thinking and this is best achieved when more and more people care for the cause. Bringing in fresh energy, newer thoughts and thereby a newer direction is as important as caring for the mentally ill.
Because, every helping hand counts.

Homeless mentally ill in Vellore

In Vellore town, the numbers of destitute mentally ill persons, with illness such that a casual passer by would identify a diseased state, has risen dramatically over the last three or four years. New initiatives by the state have been conspicuous by their absence. Charitable organizations for the destitute, elderly, or mentally retarded individuals do not admit those with mental illness. Psychiatric medication is available only in district hospitals. The average citizen would dislike invoking the legal system to admit a violent patient. Even if a disturbed psychotic individual is taken to the nearby mental hospital (about 50 kms away, it is the responsibility of the person who brings the patient to apply for an admission order through a magistrate. A significant majority cannot afford to undertake the cost of travel and the loss of income consequent to missing a day's work. Those with severe deficits are least likely to be able to afford to attend on a daily basis. The lack of social workers and shortage of occupational therapists limits non-medical interventions. Against this picture of constraints and inadequacy, glimpses of care by the community, for the community and of the community stand out in stark contrast. Almost invisible to those who work in the halls of academia is a network of people reaching out to help each other.

Goaded and coerced by a local one-man social work organization called Udhavum Ullangal, Dr. Anna Tharayan submitted to the request to study people on the streets who are in need of psychiatric care. Mr. Chandrasekhar and Dr.Anna Tharayan conducted rounds on five Saturday mornings, along a three-kilometer stretch of road in the periphery of Vellore town. The team stopped and talked to anyone who showed signs of mental illness. People of the community gathered round within a few minutes of initiating a conversation. At least one person knew some details about the background of each individual. It became quickly apparent that every destitute person was being fed, clothed and in some cases given a haircut and shave, periodically. Children playing in the vicinity were able to tell us how far each person wandered and what particular talent each person harbored. We discovered that the ‘People of the Street' eat only once in two or three day's even if they are offered food more regularly. They come back to the same shopkeeper or household to ask for food. They take shelter in empty school buildings or doorsteps in inclement weather. They bathe by standing out in the rain fully clothed.

Among others, we met Jeba (name changed); to a casual passer-by she is a middle-aged woman who has been living under a tree on the side of Arni road outside a pawnbroker's shop for the last twenty years. She once functioned as a domestic help and lived alone in a self-sufficient manner. Over the last twenty years, the ravages of schizophrenia have rendered her unable to work, caused a constriction of her social circle such that she trusts no one but the pawnbroker, and has removed all instincts for grooming. She sits on a pile of bricks among the stray dogs that she feeds, scribbling in a notebook whenever she is not shouting at invisible persecutors in foul language. She believes she is keeping accounts for the government treasury. She preserves, with a level of care that she does not waste on herself, a pile of about twenty books of unintelligible scribble. Her hair is gathered together in a disheveled manner in a prominent topknot. Her clothes are not clean and her mouth is tobacco stained but she does not smell bad and does not manifest any obvious signs of disease.

The pawnbroker, a middle-aged man from a lower middle socio economic background, describes her as a blessing. He values the fact that she keeps intruders away from his shop and religiously sweeps the pavement outside. He involved her in the celebrations of his son's marriage and gives her sufficient money on a daily basis to ensure that she can buy what food she needs from a nearby stall. He understands that she is suspicious and does not accept cooked food even from him. His one regret is that she does not accept his offer of a cupboard to hold her notebooks and the spare clothes she possesses. When asked what will happen if Jeba falls unconscious or the Highways department widens the road and demolishes her ‘residence', he points to the sky and says "God will take care".

Jeba is being enabled to live with as much self-respect and autonomy as is practical in the circumstances. The attitude of her caregivers in their tolerance and acceptance is more sophisticated than the restrictive conventions of a professionally run shelter or treatment facility for people with this severity of mental disease and financial deprivation. Previous acquaintances who tried to offer her medicines know that she will never accept treatment of her own accord.

Jeba's story poses a question to those of us who are mental health professionals: Would it be more correct to enforce admission to a mental health facility and medical management? Should she be given a more ‘acceptable' role than her chosen one?

Strengths exist within communities which, when integrated with formal services, reduce the burden of work and perhaps increase the efficiency of the system.

In Thirupathur, twenty-six men obviously suffering from mental illness who dwelt on the streets of Vellore district have been gathered together and given food, shelter and protection against the risks and complications of their disease. The man who coordinates this effort was mentored by Mr. Chandrasekhar and had already established a branch of Udhavum Ullangal in Thirupathur. He was so moved by the plight of the homeless mentally ill in his hometown that he jettisoned a career in computer applications in order to help them. Armed only with the conviction that they needed to be helped, Mr. Ramesh moved the government to give permission, raised the required funds, and recruited untrained compatriots to help run the home. He organized careful records of admission and treatment, administered whatever medicines were prescribed by visiting doctors, provided occupation, generated incomes from the handiwork of the residents, and deposited money earned into savings accounts in the local post office. He and his team of seven have proved that they are able to make a relationship with men who do not speak, or speak only north Indian languages, and who suffer from delusions and hallucinations. He realizes that left to themselves they would do nothing but smoke or wander aimlessly, and that it is highly unlikely that he will receive thanks for his efforts. Not satisfied with looking after their bodily needs, this home has given its residents horse rides, motor cycle rides, meals at local restaurants, special food and new clothes on festival days. Mr. Ramesh prays with them and offers them opportunity to apply the same chandanam that he uses, on their forehead as well. Valiant and repeated attempts are made to trace the families of the residents. Even in the rare event that the family is found, poverty and old age among relatives limits the residents' return to their homes. In some cases relatives have forbidden the sharing of information of their whereabouts with the resident because of the level of conflict that had existed in the past.

These samples of the culture of care cannot be allowed to conceal the neglect, abuse, and persecution of the mentally ill that lurk out there, in the cracks between these ‘idyllic' stories. The undeniable reality of the rich resource that co-exists with the deficiencies is the fuel line to which professional could seek to connect. It is possible that when science filters through the hearts and minds of the community, and when professional endeavor is guided by social norms and culture, we will witness a fine tuning of ‘service-to-need' that is lacking today. If, in addressing the pathology of those who have fallen along the wayside, territorial instincts and academic gratification are subjugated to the fulfillment of need, it is possible that we will succeed in making much more of a difference with the limited resources that we have. The recognition of the central role of the patient's perceptions and preferences as a relevant mission in rehabilitation is gaining ground. In cultures where the individual continues to be rooted within a family and community, the lead given by those who form the support networks can scarce be ignored.

The messages from the community are at least twofold. The first is that a wealth of resource already exists in our communities. The second is that where basic amenities essential to human life are in short supply, providing these resources to those in greatest need is more of an imperative than instituting sophisticated treatment facilities. Many levels of care exist in the community. From the point of view of a medical model, or in the ethicist's eyes, there would be much to be desired within some levels. In the absence of these levels of care, however, the sufferers would probably be worse off than they are today. While we await the advent of adequate care, would it be worthwhile empowering those who toil? Rehabilitation in psychiatry would be wealthier if it were informed by already existing systems of care in the community. The nature and priority focus of non-professional initiatives seem to be more in tune with the needs of the people. The adherence of these models to socio-cultural norms and financial constraints predicts greater sustainability.

Half-Way Homes
In India, which has only 3 psychiatric beds per 100000 population, majority of the persons with mental disorders are living with families and are cared by the family members. However, urban life often results in need for alternative places of care. A number of innovative approaches have been developed to develop these places of temporary/long term care. The following two examples illustrate this service.

Medical Pastoral Association (MPA), Bangalore

The Medical Pastoral Association (MPA) in Bangalore was founded in 1964 by a small group of dedicated men and women, members of St. Mark's Cathedral, pastors, doctors and other caring professionals, and lay persons. MPA was one of the first voluntary organisations in the country concerned about the physical, mental and spiritual dimensions of the health of individuals, their families and the whole community. The initial work of MPA was with alcoholics and with people who had attempted suicide. MPA has trained several batches of concerned people in suicide awareness and how to help depressed people. The Managing Committee of MPA strongly felt the need to help in the rehabilitation of partially recovered mentally ill persons, as no such facility existed at that time. In 1978, the Half-Way Home for recovering mentally persons was opened -the first in India - placed in the general community.

The Half-Way Home is a big cottage comprising six rooms with three beds in each, another room for the female staff to reside in, one for the house parent's office, three halls (for occupational therapy, recreation and dining), a kitchen and a store. The Half-Way Home (HWH) is a transitional home and not a psychiatric treatment facility. It has the atmosphere of a big home with house-parents, staff and fellow residents who mingle easily and know each other well. Patients who have been treated in psychiatric hospitals or by psychiatrists are carefully screened by MPA's consulting psychiatrists at NIMHANS and then interviewed by the Admissions Committee consisting of a secretary, administrator, house-parents, and senior counsellor. They are admitted on the condition that their medication is stabilised, and they are ready for the HWH programmes. The usual duration of stay is 9 to 12 months. An administrator is in charge of administrative aspects, including the routine office work, with the help of an accountant, typist and an attender. A mature and experienced couple are empolyed by MPA to be the house-parents to see to the day-to-day running of the MPA, and are in charge of the helping staff-cooks, gardener, etc. The counselling staff are recruited from MA degree holders in clinical psychology or social work. They are employed by MPA, generally full-time, and occasionally part-time. There are usually about 4 counsellors for about 20 residents. Some of the counsellors reside on the campus and take turns to do the duties of the house-parents on their day off. A warden is appointed to look after the hostel. Staff members get regular in-service training, attend conferences and share experience with others in the field. There are also special team building sessions to help avoid burn-out.

Activities at the HWH are designed to improve specific deficit areas of the residents. A structured time-table is drawn up and residents are required to follow it and attend all programmes. Common problems seen in most residents when they are first admitted are a lack of volition, inability to get up in the morning, little or no personal hygiene, no interest in activities, reluctance to take medication. They are generally slow and lethargic. Problems of irritability and aggressiveness may erupt unexpectedly, and staff members have to learn to deal with each crisis using their own expertise. Self-pity, depression, suspiciousness, boredom, inability to make confident decisions are also problems to be tackled. This is done in a loving, caring, yet disciplined manner by the entire HWH community and through a systematic range of therapies - occupational, art, play, music, group therapies, and individual counselling. Independent living skills and social skills have to be learned. Programmes at HWH for mental stimulation include 'Quiz' and 'Current Affairs' reading of newspapers is encouraged so that they are aware of the outside world. Classes in English and value education are conducted. For physical stimulation, aerobics, games, gardening, and walking are encouraged. Yoga helps to calm their inner agitation. Art in various forms and using clay in pottery is found to have healing properties. Cooking is also a rewarding programme. Besides this, regular outings are organised for the residents - movies, restaurants, exhibitions, to teach them responsibility, handling money and mixing in the community. The residents are expected to be rehabilitated sufficiently within one year to return to their families or to take up jobs to support themselves and live independently. MPA also provides a day-care facility where a person can attend all the programmes and return home each evening.

The Richmond Fellowship Society (India), Bangalore

The Richmond Fellowship Society (India) was established in the year 1986 in Bangalore, at the initiative of the Richmond Fellowship International (RFI). The objects of the Richmond Fellowhip are: 1) to offer skilled help to those who are chronically mentally and emotionally disturbed and need support to be rehabilitated and reintegrated with the family and community; 2) to create public awareness and to enhance people's understanding of themselves and disabled; 3) to promote mental health in the community, particularly by providing courses in personality development and humanism, and giving an opportunity to the community to interact with the disabled; 4) to collaborate with all activities of similar organizations.

The first house of the Fellowship 'Vikas' (which means 'to blossom'), was a trial project and was set up in farm land made available by a family member. This house was to provide residential care facilities for 10 male residents. Encouraged by the success of Vikas, two years later the RF headquarters secured financial assistance to set up a model house to accommodate 21 residents. This house was called 'ASHA' (meaning Hope) This home is located in a residential area This home reflects the ordinary pattern of an average household. Rehabilitative activities form the core programme. Regular habits are inculcated by setting times of getting up, personal care, meals and other activities, because many residents have been incapacitated so far as normal routines are concerned. The whole morning for five days each week is geared to a work activity programme. Occupational therapy activities are set to individual needs and help residents develop a number of skills and the habit of work itself. The emphasis is on group life. Residents also have individual counselling sessions with their keyworker on the staff team. Families are involved from the very inception of placing their wards in the process, in family therapy, and in a 3-monthly progress review.

Staffing being the crucial ingredient by which the therapeutic community stands or falls, a staff member of the therapeutic community house has to be a 'jack of all trades'. Staff members have to be therapeutic, not only in their personalities and professional discipline, but also in their daily living. Hence the RFI training is formulated to train and support the staff to stay on his job. Each house has a staff team of one staff member for at least 3 4 residents. Their role is to encourage positive interaction between community members, to give support to individual residents and to carry the final responsibility in the welfare of the whole household. They keep in touch with the residents, family, and the psychiatrist, as and when necessary. The staff are also responsible for the day-to-day administration of the home. They come with the background qualification of clinical psychology, or of medical psychiatric social work, and also receive training under the training programme of the Fellowship. They are also supported by volunteers coming from the local area and volunteers are a link with the local community.

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Association for Mentally Disabled (AMEND), Bangalore
Another initiative is the families of persons with mental disorders coming together to support each other and act as an advocacy group. Two such example are given below from Bangalore and Poona cities. Similar groups are functioning in a number of other major cities in India.

This is a self-help for users and carers, started in borrowed premises with borrowed furniture. In the words of the founder (Mrs Nirmala Srinivasan): "Since 1992, the membership has been growing slowly but steadily. When we met for the first meeting, even though we had not met each other, we felt we knew each other. Our experiences were sufficient to lay the foundations. The emotional bonding is our first and foremost commitment. In fact, some families are not able to appreciate because they are in the trap of misconceptions and myths about schizophrenia. For these families, emotional support or sharing the learning comes last in the agenda. The day-to-day agony of going through with patient drives them unwillingly to look for long-term institutionalisation. The families of the mentally ill need help. Some of the storms that can sweep over the families when schizophrenia strikes are: sorrow, fear, disruption of family relationships, disruption of family health, despair, anxiety, guilt, difficulty in accepting the illness, a feeling of isolation, exhaustion of spirit and resources, and apprehension about the future. There are hundreds of families who need help. Someone they love is suffering from schizophrenia. But these families are isolated. They need to meet and find emotional companionship. New demands were made on the members to guide each other and share each other's experiences with a view to learn about various aspects of coping with the stress - a problem about which they know almost nothing. Mental health educational programmes are aimed at normal people coping with normal stress problems. The affected families become aware of the facts the hard way after living with the ill person for a number of years. The self-help initiatives promote a friendly and familiar environment for the suffering families to gain from the experience of others".

From one stage to another, AMEND gained strength. Emotional support and shared learning led to participants feeling for each other. The AMEND family is always there to help in a crisis. It became a way of hope to all families. In almost all the meetings, the repeated emphasis is on what the families can do to promote the wellbeing of the patient, and prevent crisis and further deterioration. Many families have had exposure from those who have benefited from family therapy services. It was also found that the attendance of the meetings varies with the agenda. Lectures from leading psychiatrists attracted the maximum crowd; similarly, any input on long-term care and rehabilitation was also well attended. The crux of this successful transaction between families lay in the fact that they all shared the same agony which the professionals can only talk about.

Besides self-support, information dissemination was the next major landmark in AMEND's modest achievements. With the immense support given by professional psychiatrists, psychiatric social workers and other NGOs, AMEND reached a stage where the focus had shifted from illness per se, to its management. New members who come with the hope of finding instant solutions, are encouraged to look into the benefits of multi-therapy treatment models, and not get bogged down with the conventional syndrome of chronicity of schizophrenia. Knowledge of the new drugs, such as clozapine, have raised hopes, pushing the agenda into action plans. Similarly, AMEND is also trying to get the term 'Disability' redefined so as to make the benefits of the disabled available to the mentally ill, under the Persons with Disability Act of India (1995).

Based on the experience of AMEND, it can be said that self-help groups can go a long way in educating the public, raising funds for research, and fighting for better legislation. They can lend emotional support to families. Families no longer need feel isolated. Talking to others helps. Relatives see their secrecy and come forward to admit they have a problem. Many times a mentally ill person creates havoc in family relationships. Compassionate counselling by trained therapists arranged by self-help groups can lead to meaningful relationships again. Friction between husband and wife as to how to handle a crisis is turned into a supportive effort by the parents to deal with the matter in an emotionally restrained way.

Schizophrenia Awareness Association, Pune

Till 1996 in Pune professional intervention was the only treatment available for persons with mental illness. There were clinics of a few psychiatrists, very few hospitals for admitting severely mentally ill persons and the Regional Mental Hospital at Yerawda. However, there was hardly any complementary activity at the community level. Two important events in mental health field that occurred in 1996 were : one was formation of Schizophrenia Awareness Association for rehabilitation of shubharthis and the other was formation of Ekalavya self-help support groups, one each for shubharthis and shubhankars. An important event was the formation of one of the earliest MH self-help support groups in Pune called Sihaya. Sihaya gave persons with mental illness safe place to share, to ventilate, to socialize and to develop fellowship. For them this safe place was free of the stigma and competitive pressures of ordinary society. Some of them expressed fear of losing their privacy and confidentiality. The initial response was very good but it reduced after some time. Later it was realized that the number of persons with schizophrenia is large, their needs are different and they become a drag on the progress of other patients. Hence a decision was taken to form a separate support group for persons with schizophrenia.

For the success of any program it needs direct involvement of stakeholder and lay persons so as to ensure it has truly ‘people's participation'. This becomes all the more important in the management of mental health issues. Involvement can be taken right from conceptualization of a program to its implementation. In India such involvement is very crucial for several reasons. Firstly, in India the number of professionals is very meager compared to the demand. Secondly, rehabilitation facilities either by government or private sector are extremely inadequate. Hence if people come together and form a group it is most beneficial. This group will exchange information about illness, provide mutual moral support and instill hope of recovery. The group provides a forum to the professionals also so that they can share their expertise. This kind of ‘forum of the people, by the people and for the people' is not otherwise available. Another reason for choosing people is that the quality of help that shubharthis and shubhankars can give to each other is really something which cannot be compared to what others can offer. People with first-hand experience - either shubharthis or shubhankars - can genuinely understand each others' problems, have empathy and provide support in times of crises. Usually the stakeholders, their friends and relatives have genuine interest in providing meaningful life to shubharthis. Non-stakeholder but committed volunteers too are an asset to support group activities. They are ready to devote time, ideas, raise resources and take up new initiatives for providing meaningful life to shubharthis. Picnics, musical programs, informal cultural events etc. are possible with their own initiative. Since these people work on voluntary basis their services are cost- effective. The services of self-help group meetings can be availed of by the families without much expense.


The basic aim of SHG is to create conditions or environment, which will motivate individual members to take initiative for self-improvement. Individual attention is possible only to a limited extent unlike the service provided by the professionals. Services, requiring a lot of time for an individual, needing tailor-made approach, however, are more of an exception when it comes to people-based organizations like ours. We do not provide any therapy which lies exclusively in the jurisdiction of the professionals. Hence for any professional treatment or counseling the families independently seek resources outside SAA. Unlike in a commercial for-profit organization, there is greater freedom and flexibility, of course within the limits of proclaimed objectives, in the matter of hierarchy, decision-making, delegation, taking responsibilities, etc. Consequently, some delays, minor errors in judgement, hasty decisions are noted more leniently as a learning process, provided of course the intentions were bonafide. Volunteers are usually not professionally trained in financial, secretarial, managerial or mental health issues. This, we are aware, puts a limit on their performance but genuine feedback for better performance is provided in a dignified way. Sometimes the growth and direction of the organization tends to be swayed by the enthusiasm of the new volunteers who are yet to get familiar with the organizational philosophy, aims & objectives. We encourage shubharthis, shubhankars and SAAthis to attend conferences/workshops and training which will update their knowledge and develop skills for developing them as resource persons.

Some of the lessons learnt from these experiences are: There is no substitute for one's own initiative although outside help and expertise are needed. So the philosophy is : We don't wait to get well to do things; we do things to get well and grow. Just as there are moments of deep satisfaction being able to reach out, there are also those unavoidable frustrating moments when we need to have tremendous patience and faith. It will help one to remember: Greatness lies not in never falling but in rising every time one falls. Pangs of growth of an organization can be minimized by having well-thought-out and periodically-reviewed goals, continuously motivated & trained volunteers, delegation & decentralization in decision-making, especially using management techniques. Funds are necessary for the sustenance and growth of charitable organizations. Though fund-raising itself is a specialized skill, response to one's efforts will depend much on the proof of one's work and faithful exposure it gets in the community through media persons with whom we need to build rapport. Staying focused on and conserving resources for one's chosen objectives is not easy, especially with the risk of being tempted to compete with others, using short-term gimmicks. Collaborate with and involve as many segments of the society as possible, e.g. govt. agencies, professionals, media-persons, teachers, students, corporates, for credibility and long-term gains.

In conclusion, SAA is more than convinced that there is incomparable strength to be derived by mobilizing people-oriented self-help activities, especially in a family-centric social setup prevalent in India. Burden on the over-worked and scarce professionals also is lightened by such initiatives. For the families too this system makes much economic sense. Besides these activities being more empathetic and more easily accessible aren't they worth popularising to every nook and corner of our vast and diverse country?


Care of Senior Citizens, Mumbai
The following two initiatives (from Mumbai and Chandigarh) address ‘mental health' of elderly, and not the mentally ill persons. They are special in that they are people centered.

In the words of the initiator of the Dignity programme, Mrs. Shailu Srinivasan,I stumbled upon the reality of how much a peer can do to a distressed individual when one day at my office an inconsolable Lakshmi, now grandmother, 72 years, suddenly started being attentive and listening to a member of Dignity Foundation, who happened to sit beside her in my office in Dadar, Mumbai some fourteen years ago. Grandma Lakshmi: "I cannot understand why my grandson, now 34 years will not spend time with me anymore. He does not talk to me at night when he comes home from work. He goes out on Sundays also from morning to night. My loneliness is not something he understands. For thirteen years I have been putting up with this treatment and I have nowhere to go." So saying she started crying with heavy breathing and body shaking vehemently. Mary Fernandez who also came to see me for some other problem looked at Lakshmi and said: "Do you know my daughter also behaves the same way. She even denied visitors coming to see me". For the first time Lakshmi stopped crying and started listening to what Mary had to relate to her. In another one and a half hours Lakshmi and Mary went away together, arm in arm, and to this day they work together in our project called Dignity Companionship.

It was born out of my realization, sans any professional knowledge, that people can console and help each other and in so doing each one acquires a certain power over themselves and the difficult situation. As Social Worker trying to attempt to find solutions to problems of older persons, it occurred to me that I can utilize the entire subscriber base of my magazine Dignity Dialogue, the magazine for Productive Ageing to counsel and support others in difficult circumstances. When 128 people out of 2000 responded to my call to come over for a meeting on loneliness mitigation in September 1995, the first service ‘Dignity Companionship' was born. This was to be a precursor to another 20 services all of which came to rely on the same backbone - seniors as volunteers.

Dignity Foundation was set up as a charity to promote "productive ageing", premised on scientific evidence that ageing is keyed to the level of vigour of the body and continuous interaction between levels of body activity and levels of mental activity. The objectives of Dignity Foundation are: 1) information Dissemination - to provide information to seniors through publishing, holding seminars and discussions; 2) undertake various services for their support and welfare and enable them to live productive, meaningful and interesting lives, drawing upon their knowledge, skills and experience; 3) construct a database to determine needs of senior citizens in India and devise ways to meet them; 4) to build awareness by dissemination of data collected from various sources; 5) to offer services which cater to the needs of the Senior Citizens; 6) to mobilize Senior Citizens to form a new identity group and 7) to undertake advocacy with government and public welfare bodies with respect to the issues affecting the older persons at large.

But what does one actually "do" in a society where such negative imagery of old people and discrimination is at its rampant worst. Witness, for instance, the plight of Dignitarian Mr. E. A. Abraham (82), Mumbai, who wanted to enrol for a course in a local college to learn Sanskrit. He was denied admission everywhere on account of his age. He therefore took to working for a Ph.D degree in Bombay University because that was the only possibility that did not have age bar. He successfully obtained a degree in Sanskrit when he was 75. Instances of denial of opportunity for productive ageing run into tomes of gerontological literature documented in Dignity Dialogue, the monthly magazine for productive ageing, where subscribers give vent to their agony, disappointment, disillusionment, and even betrayal.

A summary of various services offered to the Senior Citizens are listed underneath and in each service delivery , another senior citizen plays a vital role:
Dignity Dialogue: The monthly magazine for productive ageing edited by a professional group of journalists and social scientists. But senior citizens are authors for some 16 pages in the magazine and they relish the creation of an exclusive space for them to voice their joys and sorrows, prose and poetry keenly shared with and appreciated by their peers.
Senior Citizens ID Card: Issued on behalf of the Government of Maharashtra. It recognizes the Senior Citizens as a homogeneous group and enables them to avail privileges. In 100 centres in Maharashtra, senior citizen volunteers occupy the counter to process application forms and issue cards. Four lakh senior citizens have been issued such identity cards.
Dignity Helpline: A social support system for older persons who are being abused. Help is extended through Peer Counseling, Police Help, Legal Help and other problem solving techniques. In four cities senior citizens volunteers receive training in social counseling and play a critical role in fact finding and conflict resolution.
Dignity Dementia Care: Provides Day Care to the patients bringing respite to the caregiver and helping the Dementia patient cope with the disease, through a variety of activities. Awareness building exercises through, discussions and seminars are also undertaken. Senior citizen volunteers take turns to sit at the centre and conduct activities for members.
Dignity Companionship: Volunteers from the Foundation visit Senior Citizens to give them company, enhancing their day-to-day lives.
Dignity Discovery: To mitigate loneliness - the most prevalent of the problems that afflict older persons, a fortnightly trip is organised to scenic sites near Mumbai for Senior Citizens. The trip encourages people to come together and forge new friendships. Senior volunteers take the lead in organising such trips.
Dignity Senior Citizens Enrichment Centre: A variety of programs are organised daily for the older persons combining entertainment and learning. The coordinator from amongst the members helps organize programmes.
Dignity Senior Citizens Counseling Centre: Senior Citizens seeking counseling regarding, investment, legal issues, property matters etc. are given the opinion through a panel of professionals respectively. Senior volunteers are at the telephone fixing appointments with professionals.
Dignity Lifestyle: A township of independent cottages for 500 Senior Citizens in Neral, near Mumbai. Residents have adopted village Mangaon, some 2 km away to help augment community resources. The Social Worker is the head of the village project.
Dignity Second Careers: Retirees interested in continuing work are given job counseling and placed in the social sectors or industry willing to employ them. A retired manager from an electronics industry is the head of this division. A new link up with UTI Bank has delivered 20 senior citizens with an official recognition as Special Desk Officers helping other senior citizen customers to the Bank.
Dignity Computer Skills: Basic computer literacy is given to Senior Citizens to enable them to communicate better and utilize their free time.
Security with Dignity: A network of protection with Police assistance for Older Persons living alone. Senior citizen members of the Foundation help 83 police stations by meeting other senior citizens in problem situations. Dignity Companion to the Traffic Police is an extension of the same principle.
Dignity Civic Service: In collaboration with the Municipal Corporation, the members are engaged in locality management, improving its cleanliness. They actively promote awareness on segregating dry and wet garbage and insitu composting.
Dignity Walking Patrol Vigilance: 350 Dignitarians keep a vigil over the Mahanagar gas pipeline of 600 km, running the length of Mumbai City. They regularly educate the residents residing near the pipelines, on the need to prevent accidents and leaks to the pipelines.
Newly launched Voice of Dignity: A Forum has been created on the Tenth Anniversary of Dignity Foundation in 2005 under this banner with decentralized facilities for hearing the voice of senior citizens across the country. A Secretariat facilitates spread of rights awareness and information through use of mass media for purposes of lobbying.
Suraksha Bhandan: An annual event reaching out to 5 lakhs of school children where elder members of the Foundation distribute wrist bands on which is inscribed: " I protect your security with dignity". The idea is to instill in children a sense of respect for elders.

Thus Dignity Foundation is serviced by a band of 2500 senior citizen volunteer members in 5 cities, who take the services to the door step of other senior citizens.

The experience of over a decade of work illustrates a number points. Firstly, the needs of the elderly population group is different in different cultures and in different social groups. Secondly, the services and approaches to care has to be tailor - made to suit the differing needs. Thirdly, there is an enormous pool of experiences, skills and resources in every community that can be harnessed to meet majority of the needs. Fourthly, the total care requires rebuilding of the caring community, starting from the family to the community and a supportive environment created and nurtured by the Government and civil societies. Fifthly, the development of innovative approaches is a continuous process, more of a marathon rather than a sprint.

Care of Elderly Women, Chandigarh

Whenever there is a talk about the groups, clubs or activities for the elderly, the focus is always on the urban middle class or elite class or elite seniors but never of the underprivileged section of the society as the care takers being to the privileges class only. This is first of its kind the first genuine attention towards the needy old women of the slum areas. The club "Ganga Devi Club" is first of its kind the pioneering work for most deprived section of the slum, women population. This club is started by Dr. Veena Wig, under the project, "ATAM VISHVAS" as one of the activities of the N.G.O. group at the centre at Mauli Jagran, at the outskirts of Chandigarh, U.T.

It is comparatively young club, as it started on Nov. 11 2004 under the tin shed of the society. There are about 40 members at present, as an experimental number. The meetings are held on every month on the 11th at 11am and last date of the month at the same time. It is easy for members to remember the dates and time, as most them are illiterate, the dates are only shifted if it happens to be a holiday or so. All these meetings and gatherings are very successful so far. The achievements are already making a dent in the slum population. The name of the club stands for the lady, Mrs. Gnaga Devi, not at all a leader or a politician, but the most abandoned, old sick, needy and neglected woman of the area, who virtually live on a "REHRI" (The pulling cart) under the tree in front of our tin shed society. The large family does not want her inside their small and already over crowded ‘katcha' room. She is most irritable with her plight age problems and situation so virtually she is more out side on her Rehri. Thus name of the club is on her name., who is symbol of the under privileged women of the slums. Almost similar is the plight of the rest of the members.

Purpose of the club is to give this group "an hour of dignity", a place to sit together, sharing the good and bad aspects of life, some bondage to each other, and providing them the umbrella of the name of Y.T.T.S., that they belong to a certain grouping in an organized way, along with providing them with some nutrition, some personal care items etc as well.

The idea and concept of the Club (samuh) was not easy to comprehend for these women. They never had the exposure of this kind of meetings and sitting together in a group, where the vocation or the family is not involved. The tradition with daily wager or working class is to sit together, at good or not so good happenings of the neighbourhood, in an unorganized and erratic manner. It took them quite sometime and many sittings together to appreciate the need of these meetings in an organized way and in a regular and regulated manner.

On a typical meeting day, a cup of tea with some biscuits or snacks are served. Sometimes donations for extra fruit and other eatables were also provided. For closer interactions and some moments of joy, the singing, dancing is frequently organized. The all participate very happily. The different festivals are celebrated with great fervor. Many group activities that they have never done all their lives, games like passing the parcel, musical chairs, drawing with crayons, which they had never held in their hands, are very touching experiences for them. Doing any activity "just for enjoyment" had never happened in their daily routines. Along with these activities, an eye camp was held and 23 spectacles were distributed. Medical checkups, gynaecological check ups were also arranged, though the follow-ups were not easy, as family members were not much cooperative, as they were mostly daily wagers.

Apart from these activities, the main aim is to spend quality time with them, to bring a smile to their faces and lives, a thing that they had long forgotten. Perhaps they can not even show a smile, as care takers may not take them as contented dependents. Personal care items according to the weather are distributed like pairs of socks, chappals, clothes, shawls, quilts, washing soaps, bath soaps, reels of thread, to make them somewhat self-sufficient. Touching instances were experienced when pairs of socks were distributed. One of the members of the group started talking them off saying "I cannot keep wearing to go home as I do not have a pair of chappals". Of course it was arranged.

The "Ganga Devi Club" has already celebrated one year of activities. The club has achieved a lot in one year. The members attend they meetings regularly and they look forward to the same. They have an identity now, a place to go where they are treated with dignity, and a feeling of belonging to a group. It has already made an impact on the neighbourhood. These old women are now seen approaching the club with a special envious look, as they approach the place, where the feeling of being wanted and an hour of dignity is waiting for them. The Club has become a role model for the area and it is the first of its kind and functioning regularly.

Role of Mental Health Professionals
The initiatives described above are essentially people' s movements. However, mental health professionals can play a role in these efforts. In order to work with such initiatives professionals have to think out of the box, have an approach to building from the available resources, acquire leadership skills, accept to work with non-professionals and form partnerships with them, be willing to share their skills and have a larger understanding of the society.

Conclusions
Urban mental health presents both challenges and opportunities for innovative mental health care. The experiences described illustrate the spirit of understanding the needs of the specific population, use of community resources partnership between people and professionals towards the common goal of a better life for persons with mental disorders.

Acknowledgements
I am deeply appreciative of the contributions of professional colleagues, Dr. Kishore Kumar, Bangalore, Ms. Vandana, G., Chennai, Dr. Anna Tharyan, Vellore, Ms. Romola Joseph, Bangalore, Dr. Kalyana Sundaram, Bangalore, Ms. Nirmala Srinivasan, Bangalore, Mr. Anil Vartak and Kundapurkar,G., Pune, Dr. Shailu Srinivasan, Mumbai, Dr. Veena Wig, Chandigarh. A fuller description of the above experiences, along with other more than two dozen similar initiatives, can be found in the book MENTAL HEALTH BY THE PEOPLE (ed. Srinivasa Murthy) 2006.
Free copies of the book can be obtained by sending an email to: murthy_srinivasar@yahoo.co.in


References
1. Srinivasa Murthy, R. (1996), "The City of Bangalore, India", in: Mental Health in Future Cities, Edited by David Goldberg and Graham Thornicroft, Mudsley Monographs 42. Institute of Psychiatry, London.
2. Srinivasa Murthy, R. (ed.) (2006), Mental Health By the People, Peoples Action For Mental Health, Bangalore.
3. Vandana, G., Radhakrishnan, R.K. (2006), "Caring by Sharing: The Banyan Story", in: Srinivasa Murthy, R. (ed.), Mental Health By the People, Peoples Action For Mental Health, Bangalore, 2006, pp. 41-54.
4. Kalyanasundaram, S. (2006), "Community care and rehabilitation", in Srinivasa Murthy, R. (ed.), Mental Health By the People, Peoples Action For Mental Health, Bangalore, 2006, pp. 55-62.
5. Srinivasan, N. (2006), "Together we rise - Kshema", in: Srinivasa Murthy, R. (ed.), Mental Health By the People, Peoples Action For Mental Health, Bangalore, 2006, pp. 142-149.
6. Vartak, A., Kundapurkar, G. (2006), "Lay persons as partners in mental health", in: Srinivasa Murthy, R. (ed.), Mental Health By the People, Peoples Action For Mental Health, Bangalore, 2006, pp. 166-175.
7. Srinivasan, S. (2006), "Using senior citizens as volunteers", in: Srinivasa Murthy, R. (ed.), Mental Health By the People, Peoples Action For Mental Health, Bangalore, 2006, pp. 306-311.
8. Wig, V. (2006), "To give them an hour of dignity", in: Srinivasa Murthy, R. (ed.), Mental Health By the People, Peoples Action For Mental Health, Bangalore, 2006, pp. 312-314.
9. Tharayan, A. (2007), "Indigenous models of care in the community", in: Commemorative Souvenir of Mental Health Centre, Christian Medical College, Vellore.

 


 
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Center for urban suffering

The study centre wishes to study the phenomenon of urban suffering, in other words the suffering that is specific to the great metropolises. Urban Suffering is a category that describes the meeting of individual suffering with the social fabric that they inhabit. The description, the understanding and the transformation of the psychological and social dynamics that develop from the meeting of ...

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The Urban Suffering Studies Center - SOUQ - arises from Milan, a place of complexity and economic and social contradictions belonged to global world.Tightly linked to Casa della Carità Foundation, which provides assistance and care to unserved populations in Milan (such as immigrants legal and illegal, homeless, vulnerable minorities), the Urban Suffering Studies Center puts attention on ...

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Centro studi Souq Management commitee: Laura Arduini, Virginio Colmegna (presidente), Silvia Landra, Simona Sambati, Benedetto Saraceno ; Scientific commitee: Mario Agostinelli, Angelo Barbato, Maurizio Bonati, Adolfo Ceretti, Giacomo Costa, Ota de Leonardis,  Giulio Ernesti, Sergio Escobar, Luca Formenton, Francesco Maisto, Ambrogio Manenti, Claudia Mazzucato, Daniela ...
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