Ideas for Rehabilitation"
(The following is taken from a
longer paper entitled Empowering the Impaired by Ishita Sanyal, Director of
a rehabilitation centre and clubhouse in Calcutta, India.)
Developments in the fields of science and technology have revolutionized
Human Life at material level. But in actuality, this progress is only
superficial: underneath modern men and women are living in conditions of
great mental and emotional stress, even in developed and affluent countries.
People from all over the world irrespective of culture and economic
background suffer from mental illness and though a number of researches are
carried out worldwide but till date it has not been possible to resolve the
The most neglected invisible problem of the society in a developing country
like India is the burden of mental problem, its effects and its outcome in
the coming years. The World Health Organisation has warned that many
countries will be unable to cope with a predicted boom in Mental Illness
over the next decade. According to Dr. Gro Brundtland, the former head of
WHO, “If we don’t deal with Mental Illness, there is a burden not only on
Mentally Ill, on their families, their communities, there is an economic
burden if we don’t take care of people who need our care and treatment.”
In India over 125
million people suffer from Mental Illness.
have increased due to poverty, illiteracy, urbanization, industrialization,
better diagnostic methods, increased public awareness.
After all drug
treatment 33% of patients do not improve.
population of chronic psychotic patients in India will be 50 millions by
But even then the government had no other option but to allocate funds on
physical illness or disabilities like cancer, AIDS or any other problem than
on Mental Illness. Lack of economic resources along with lack of
professionals in the field has made the scenario even bleaker and worse. In
India till date a person suffering from mental illness fails to receive any
support either from Government or from any organisation. Disability Card,
which is issued for all other disabilities except mental illness have
remained a dream for us those who are living in West Bengal. Even the
support of Disability Commissioner in this issue failed to provide any
The mental problem is an invisible problem and so people cannot feel it or
visualize the impact of the problem. Neither can they understand the impact
it can create on the individual who is affected and his family members. The
society is apprehending them as a burden and not putting efforts to utilize
their potentialities or putting adequate efforts to change them again in to
a productive member of the society.
The problem with illness like Schizophrenia is even more. They often remain
a burden to the society. Some live their whole lives within the four walls
of their dark room, remaining secluded and accepting a sedentary lifestyle
where they spend the day and night without doing any effective work. They
live their life on the mercy of other family members.
It is really difficult for the family members too, to make arrangement for a
non-productive family member’s food, clothing, shelter and ever increasing
cost of pharmaco-therapy. So these people, who are suffering through no
fault of t heir own, are sent to homes or government hospitals, which are
even worse than jails. Little attention is paid to their human rights, their
feelings or their emotions –although a large part of their problem centres
on feelings and emotions. Some start believing that they are not members of
this world anymore – they are here by mistake or by chance not by choice.
For some the agony is unbearable and they comit suicide. – some dare not as
they are too weak physically and mentally to take a bold step like that.
To improve the quality of life of these persons rehabilitation centers are
needed. These can provide them with vocational training to give them hope:
to work on bringing back motivation, to remove their apathy and lack of
drive and to make them capable to start earning.
It is seen that in urban populations the most important need for a person
suffering from mental illness like schizophrenia is work and economic
independence. So vocational training has the possibility of making them
productive and is a method to reach more people.
training- People from both western & eastern world can overcome the burden
of the disease if they can successfully employ themselves in creative
productive works. Even in India, where a person gets too much support & does
not need to earn money due to over protectiveness of parents, -the prognosis
& functional level remains below others who are actively participating in
Vocational Training- Selection of Vocational training depends on the
individual aptitude ability & interest of the candidate. Often the parents
who accompany the patient have a preconceived idea about their child’s
capabilities. They often try to guide us & discourage us about some
Vocational training which they think cannot be suitable for their child. It
has been seen so far that almost everyone has some creative abilities and if
this can be successfully utilized it can help them in the long run to
overcome their problems and help them towards becoming a productive member
of society. They can utilize skills learned to help them reduce their
anxiety and in some cases to earn their livelihood.
A Few Simple
Methods of Vocational training-
Collage works often help people to reduce their anger & aggression, water
colours & works with plaster of paris helps them to overcome compulsive
tendencies in them.
To unfold the hidden capabilities of these person we always encourage them
to explore their capabilities starting from simple drawing, fabric works,
glass painting, Block printing with vegetables, colourful earthen pots,
colourful earthen wall hangings, jute works, jute decorative folders, bead
work, bead ornaments, animals made of beads, mobile cover, embroidery etc.
Techniques- At First we ask the clients to explore with colours & draw
pictures. Within a few weeks, we can thus identify the person’s capabilities
in drawing, painting & fabric works. Those who cannot draw or paint well or
if they have trembling hands for which they do not have control over their
brush are asked to cut the vegetables like potatoes, ladies finger whichever
is available in their home in different shapes. They are then asked to
clolour card/ file / clothes through the blocks developed by them or their
friends from these vegetables. This is the simplest & attractive training
programme where a client becomes active in a very short period of time.
Other clients who are working for years together then give the final touch
to the handicraft products developed by them.
Fabric works- Fabric works can also be started with block printing. As we
lack funds we cannot afford to waste our clothes in the hands of person who
are yet to gain control over their fabric works. For this reason starting
with their own old ganjee or clothes help to practice them without any
wastage. They too feel proud decorating their own clothes themselves. As
they gain control we give them clothes to do it. We often give strips of
clothes where they do the fabric works, and then it is stitched to the
ganjee or shirt, which then looks attractive.
Glass Painting- This can be a very good handicraft product. To start with we
often asked them to do simple geometric figures & then proceed to more
complex drawing patterns.
Earthen pots, wall hangings- This too is started with line drawing, or
geometrical figures, which is later, developed in to attractive
Handicrafts Works-This is started with Kantha stitch, stitching falls in a
sari & then they learn other stitches & make table cloths, table mats,
napkins, Handkerchief, tea cosy trey clothes, salwar suits, saris etc.
Marketing the products- Marketing the products is not very easy especially
in India where handicraft items are readily available. The success of this
sort of rehabilitation programme for persons with mental illness depends on
the perseverance, the ability to motivate others, to make it a mental health
movement. If the parents’ group makes it a practice to buy & only buy the
products made by their children then it can be easy to get the initial
market. This certainly doesn’t mean that they will buy only the products
made by their own child- but think of all suffers as their children & buy
the products made by them. If this can be made a movement like “swadeshi
movement”developed by Gandhiji can be developed. And if the parents, their
family members & friends have feelings for the cause & can start developing
the habit of buying the products made by these persons with mental illness,
then may be one day we will be able to economically rehabilitate every one
of them; may be we would be able to change the world for them.
But we must be very rigid about the quality of the products, as no one
should buy the products made by them out of sympathy.
Computer- Computer training is suitable not only for the Western world but
also for eastern world .We are providing computer training for years
together and all our clients are computer literate.
Computer often provides a tool for psycho education, social rehabilitation &
economic rehabilitation too. The person who comes to our center at first
lacks the self-confidence and self-identity. They are not sure about
themselves. Writing their names on computer screens in different styles
gives them the pleasure to learn more. The knowledge of the Internet helps
them to get proper psycho education about their sufferings and possible
solutions. This helps them to learn about their difficulties in a safe,
As they generally lose control over their lives – gaining control over a
machine like computer helps them to gain confidence & desire to gain control
over their lives. Computer training along with spoken English classes often
helps them to get some jobs in nearby areas. They can even do computer
typing in small computer institutes that have grown enormously in India or
other developing countries.
The role of Parents in Vocational Training- Parents have a very important
role to play in the rehabilitation of persons suffering from mental illness.
It has been seen that supportive parents who are not overprotective can help
their child to gain adequate confidence & functional level & on the other
hand too much overprotective parents creates a hindrance towards the growth
& development of their affected child.
Vocational training along with learning few basic life skills for their
proper functioning like going to the bank, depositing electricity bills,
marketing the day to day products, taking a few responsibilities at home,
looking after their parents, helps to improve their functional level and
make them self-dependent. We also have some fixed responsibilities for all
the clients at the centr: eg some setting the mat on the floor; some
distributing the tea, some selling the products during exhibition; elder
clients helping the younger ones to learn the training programmes. As we
have to run the center without any monetary support from government or any
organisation we try to utilize the human resources of our clients. This not
only reduces the running cost but also helps to regain the lost confidence
of our clients.
Social rehabilitation – This is the most important need for the people
suffering from these disorders. Whenever, any human being suffers from any
disease or crisis it is human to want the support, the comfort of family
members, friends and community. This culture still now prevails in India –
though there is a breakdown of extended family, due to the impact of Western
influence on Indian society – but till now there is a huge difference
between the lifestyle of Indians and that of the western world. Till now
people care for their family members; parents support their children till
their death and siblings take care of their affected family member. Till now
the Rehabilitation centers run by the self-support groups of India are more
effective than those run by professionals. In this background where the
bondage of love and understanding is important, social rehabilitation of the
sufferers is important.
Due to stigma, due to hopelessness, due to fear of rejection – the sufferers
often try to avoid interacting with the society. This creates a barrier.
Self Support groups helps them to first get the social acceptance. “I am
still loved & cared by so many group members” help them to get the needed
support & guidance. It is really surprising to see how they help their
fellow friends during the annual tours from our center.
A few important things for proper rehabilitation are developing the feeling
of togetherness, the bondage, the love, the “family feeling” – that we all
belong to the same family / community. This helps a lot to overcome their
deep-rooted insecurities & anxieties.
-Ishita Sanyal 2006
Founder Secretary, Turning Point, a rehabilitation center.
Director Disha, a child guidance center.
Member of WFSAD (World Fellowship for Schizophrenia & allied disorder)
Indian Representative of ISPS (The International Society for Psychological
Treatment of Schizophrenias & other Psychoses)
Director of NAMI, India, Eastern Region.
Presenters mailing Address-27 Jadavpur East Road, Kolkata-700032
West Bengal, India
E Mail email@example.com
The Indian case
the events marking World Mental Health Day was a parade through the
Indian capital, Delhi.
Campaigners described the neglect of people with psychiatric disability
in the country as a national emergency.
head of India's Institute of Human Behaviour and Allied Sciences said
women faced the greatest problems, including being abandoned by their
families following psychiatric illness.
said that in his own institute, there were people who had been cured up
to 20 years ago, but had nowhere to go.
of the issues surrounding mental illness in India are common to the
the BBC's South Asia correspondent Mike Wooldridge says problems in
India can be particularly acute because of its ever-growing population
and limited public resources.
Nearly 25 million people in India are in need of mental health services.
these at least a third need help to cope with disability resulting from
various psychiatric disorders.
experts have calculated that mental health problems contribute to an
even greater reduction in the quality of life in India than tuberculosis
(Article Taken from UNI .DI 59 , 4 October 2001)
450 MILLION PEOPLE SUFFER FROM MENTAL
Delhi, Oct 4 (UNI) A staggering 450 million people suffer from mental
and behavioural disorders, which is among the leading cause of
ill-health and disability worldwide while one in four people are
affected by mental or neurological disorders at some point of time in
has been highlighted in the World Health Report 2001 titled 'Mental
Health: New Understanding, New Hope', which was released simultaneously
Releasing the report here, WHO Regional Director for South East Asia
Region Uton Muchtar Rafei said that in the South East Asian region 27
per cent or nearly one third of disability is due to neuropsychiatric
disorders. The mortality statistics however, does not reflect the burden
of mental and neurological disorders, which cause untold sufferings. He
said stigma and discrimination faced by persons with mental disorder and
misconceptions about them was the major challenge in dealing with the
problem. Moreover, the region faces great scarcity of trained manpower
as there is only one psychiatrist in Bhutan, 65 psychiatrists for 115
million people of Bangladesh, 420 for 200 million people of Indonesia
and only 3500 for one billion Indian population.
called for urgent upgradation of services and trained manpower to deal
with increasing mental and neuro- psychiatric illnesses in the countries
of the region.
Uton said that member countries should develop Community-based mental
health programmes shifting from traditional practice of hospital based
psychiatry. Through proper programmes and projects a lot could be done
to reduce the enormous burden on mankind, he added.
Presenting a synopsis of the report, WHO Deputy Regional Director for
the region Dr.Poonam Khetrapal Singh said that every year one million
people commit suicide while 20 million attempt to kill themselves. These
diseases are the leading cause of disability, particularly in the most
productive years between 14 to 44 years.
report underlines the importance of countries to have appropriate mental
health policies, proper financing of mental health care and a thorough
revamping of laws and practices in dealing with mental ill. The report
includes ten recommendations which if implemented properly could go a
long way in meeting the mental health needs of the population, she
is the second news story filed by the UNI Special Correspondent.
( Article Taken from UNI AJ MS , BK1906 , 4 October
2001, ZCZC, DI 68 )
DISORDERS : NEW
Vijay Chandra, WHO regional advisor, Health and Behaviour, said that
with greater life expectancy, the number of patients with
neuropsychiatric disorders is likely to increase. This will have a
social and economic impact with people facing rejection, isolation and a
high risk of human rights violations. Moreover, in the absence of
economic safety nets, few people have access to health or disability
insurance, which further increases their vulnerability.
Listing the steps to be taken by the coutries, Dr Chandra said that
mental and neuropsychiatric disorders must be treated at the primary
health care level with the support of the community. Human resources
need to be developed urgently with an increase in the number of
psychiatrists and neurologists. General practioners, nurses and lay
health professionals must be trained in identifying and managing
patients and appropriate medicine must be made available at an
stressed the need for creating greater awareness in the community about
such disorders. The national policies should be established and
upgraded, programmes formulated and legislations must be strengthened to
protect the human rights of these patients.
S Goel, National Consultant on Mental Health to the Indian Government,
describing the situation in the country said major mental illnesses like
schizophrenia, bipolar disorder and major depression affect a
significant number of people and other psychiatric disorders are also
quite common in the country and added that suicides and its attempts are
growing particularly among women, children and adolescents.
Rapid urbanisation, breakdown of the joint family system and migration
of young adults from villages to towns in search of employment has led
to erosion of the traditional social security network and this has
significantly contributed to the burden of mental illness in the
country, he pointed out.
According to Dr Goel, future strategies include a ten-fold increase in
the budget allocation for mental health in the tenth five year plan to
Rs 150-220 crore. India would focus on district mental health programmes,
strengthening departments of psychiatry in medical colleges, upgradation
of mental hospitals, energising central/state mental health authorities
and promotion of reliable community based research, he informed.
( Article Taken from UNI AJ MS HS1920 )
MENTAL illness is often perceived
by the society in two diametrically opposite ways. First is
being sceptical about a person's ability to work and perform his
duties well after a period of mental illness. "They might
consider this illness adversely when I am due for my promotion
next year," said Anbu (not real name), a government employee as
he recovered from an acute episode of Schizophrenia. Many others
with similar concerns conceal their mental illness from their
employees and choose to forgo their medical benefits.
On the other end, people,
including policy makers, are sceptical about disability in
persons with chromic mental illness. "They are just lazy. There
is nothing wrong with them," is a common belief.
Significant advances in the
treatment of psychiatric illnesses have helped many persons
recover completely. But, we still have a small percentage of
people with specific illnesses who do not improve with the
available treatment options. They remain disabled. If you
consider the incidence of mental illness and the population of
India, this small percentage translates into a large number.
Dr. Thara, Director of SCARF
(Schizophrenia Research Foundation) and Chairperson of the
Rehabilitation committee of the Indian Psychiatric Society,
says, "The disability associated with chronic mental illness is
invisible. The impact on family members is considerable."
Take for example, Schizophrenia.
It is characterised by delusions , hallucinations and other
thought disorders. These positive symptoms usually respond well
to treatment. Many also have what are called as negative
symptoms, namely apathy, blunted emotional responses and paucity
of speech. These lead to social withdrawal and lowering of
social performance and cause disability in chronic
schizophrenia. Factors responsible for chronic illness are delay
in starting treatment, irregular treatment, early onset of the
illness, poor occupational adjustment prior to illness, and
certain subtypes of schizophrenia called simple schizophrenia
and magical or religious treatment being sought first.
During the initial phase of
Schizophrenia, there are chemical changes in the brain, which
can be reversed by medication. As the illness progresses, subtle
structural, irreversible changes develop in the brain. This
coincides with the appearance of negative symptoms and
disability. Once disability sets in, it does not easily respond
to medicines. These persons need rehabilitation in the form of
Even an apparently minor illness
like Obsessive Compulsive Disorder (OCD) can be severely
disabling for some persons who do not respond to medicines. Bala
has to wash his bathroom, bucket and the mug ritualistically a
few times before starting his bath. His bath takes another four
to five hours, so he can't go to work in time. Each action or
decision is an arduous task, as he struggles against repetitive
and intrusive obsessive thoughts. He resigned his jobs, as he
could not do any work while at office. The long hours taken to
do a task may be amusing for an observer but is extremely
painful and disabling for the sufferer.
Disability due to depression is
again an invisible disability. The person loses interest in all
activities and even simple tasks needs considerable effort.
Chronic depression is relatively rare compared to chronic
Official recognition of
disability due to chronic mental illness is slowly growing.
After considerable lobbying by NGOs, psychiatrists and families
of mentally ill, disability due to mental illness was included
in the "Persons with Disability Act" passed by the Parliament in
1995. The objections raised by policy makers before 1995 were
that, one, mental illness was transient. But some conditions are
not transient. The second objection was about measuring and
quantifying psychiatric disability, as disability benefits are
given for those with a disability of 40 per cent or above.
This was a genuine lacuna that
was rectified later. Dr. Thara, on behalf of the Indian
Psychiatric Society, evolved an assessment tool called Indian
Disability Evaluation and Assessment Scale (IDEAS). This has
been field tested in eight centres in India and found to be
valid. The Ministry of Social Justice and Empowerment,
Government of India gazetted it in 2002.
But in practice, disability
benefits are still elusive for persons with chronic mental
illness. Official neglect is evident in the omission of a
representative for the mentally ill in the recently constituted
Disabilities Commission. The only benefit so far has been the
transfer of family pension for the disabled. There is still no
system in place to provide travel concession, which would make
it easier to reach their rehabilitation centre or hospital. All
they need is empathy and support to rebuild their lives in
dignity. It is high time the government started trying to
implement what was envisaged in the Persons with Disability Act,
The writer is a consultant
Family and the care of the chronically ill :
the 1960s a programme was stared in the USA and subsequently in other
western countries to treat mentally ill patients outside mental
hospitals. This programme was started, not because there was a shortage
of mental hospitals but because of the new knowledge, which showed that
long-term hospital stays could lead to chronicity. The programme
involved the setting up of half-way homes, hostels and, most
importantly, the treatment of patients in their own family settings
through follow up visits by nurses and social workers. It was soon
discovered that even rich western nations did not have sufficient funds
to run the half-way homes and the domiciliary services. Above all, the
family was just not willing to keep the patient. The result was that
the patients were coming back to the hospitals through a kind of
revolving door situation and if the re-admission policy was strict, they
became homeless and roamed the streets. As recently as 1985, I saw
disturbed psychiatric patients walking about in parks around Harvard
University. I also read reports of patients who were violent on the
streets and some who died of exposure. My first reaction was
self-congratulatory. " Are we not so much better off in India where the
family is willing to look after its own?" This reaction was short-lived
because I soon discovered that a western family was not so much
unwilling, as unable to do the caring. With the nuclear family being
the norm, all able bodied people going to work and children going to
school, who would look after the patients during the day or even at
night, following a hard day.
Family care in India :
The tide is turning in India as well. There is an increasing migration
to the cities, a gradual diminution of family size and fewer people
available to stay at home to look after patients. Is it likely, even in
India, that people will continue to look after the mentally sick when
other pressures increase? The process of social change is going to
become faster with the new economic philosophy. I am afraid that family
support is not going to be as easily available in the future and if the
community is interested in the welfare of the mentally ill, it will have
to think of other means.
writing is already on the wall. Wherever half-way homes for the chronic
mental patients are available, they are running full and have long
waiting lists. This, in spite of the fact that most places charge
amounts which are more than the annual incomes of average Indian
families. As I worry about this, I am appalled that almost all the
mental hospitals of the country are vying with each other to give up
their asylum function; the shorter the stay of the patient in the
hospital, the more modern and scientific they are supposed to be. The
space and services, which were reserved for chronic patients in the old
fashioned hospitals, are dwindling away rapidly.
Just as 20 years ago, when we started innovative programmes for the
treatment of the mentally ill, we must now start developing innovative
programmes for the care of the chronic mentally ill patients. Before
accelerating social change forces the family to deposit its chronic
patient on the road, we must start planning for a roof over his or her
head and arrange food, clothing and some recreation, to put some meaning
into his life. This is too big a task to be left to the private
sector. In spite of all the effort in the last 10 years, there are only
about 250 places for chronic mental patients in private establishments.
The funds required for even the minimal care of non-productive chronic
mental patients are massive. The government will have to shoulder the
responsibility and the planning process should start immediately. It is
in this context that the giving up of the asylum function by the mental
hospitals, which possess a lot of space as well as a fair number of
nursing aides, seems so irresponsible.
Impact of Mental Illness on Society
"...the burden of
psychiatric conditions has been heavily underestimated..."
The burden of
mental illness on health and productivity in the United States and
throughout the world has long been underestimated. Data developed by the
Global Burden of Disease study1
conducted by the World Health Organization, the World Bank, and Harvard
University, reveal that mental illness, including suicide, accounts for
over 15% of the burden of disease in established market economies, such
as the United States. This is more than the disease burden caused by all
Global Burden of Disease study developed a single measure to
allow comparison of the burden of disease across many different disease
conditions by including both death and disability. This measure was
called Disability Adjusted Life Years (DALYs). DALYs measure lost years
of healthy life regardless of whether the years were lost to premature
death or disability. The disability component of this measure is
weighted for severity of the disability. For example, disability caused
by major depression was found to be equivalent to blindness or
paraplegia whereas active psychosis seen in schizophrenia produces
disability equal to quadriplegia.
the DALYs measure, major depression ranked second only to ischemic heart
disease in magnitude of disease burden in established market economies.
Schizophrenia, bipolar disorder, obsessive-compulsive disorder, panic
disorder, and post-traumatic stress disorder also contributed
significantly to the total burden of illness attributable to mental
projections show that with the aging of the world population and the
conquest of infectious diseases, psychiatric and neurological conditions
could increase their share of the total global disease burden by almost
half, from 10.5 percent of the total burden to almost 15 percent in
Depression is the leading cause of disability worldwide among
persons age five and older.
For women throughout the world as well as those in established
market economies, depression is the leading cause of DALYs. In
established market economies, schizophrenia and bipolar disorder are
also among the top ten causes of DALYs for women.
The Leading Sources of Disease Burden in Established Market Economies,
(measured in DALYs*)
Ischemic heart disease
Unipolar major depression
Road traffic accidents
Lung & UR cancers
Dementia & degenerative CNS
Disease Burden by Selected Illness Categories in Established Market
(measured in DALYs*)
All cardiovascular conditions
All mental illness including
All malignant disease
All respiratory conditions
All alcohol use
All infectious and parasitic
All drug use
Mental Illness as a Source of Disease Burden in Established Market
(measured in DALYs*)
Unipolar major depression
All mental disorders
measure lost years of healthy life regardless of whether the years were
lost to premature death or disability. NIH Publication No. 99-4586. Reprinted by permission.