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Since antiquity society has detected
disabilities amongst it’s members arising out of obvious deficits in
anatomical structures, sensory functions and intellectual developments.
These disabilities all but debarred the affected persons from
participating in the main stream of social life. With the decline of
feudalism and the rise of democracy the spirit of Zeitgeist favored the
concept of equal opportunity for care, employment, relief and empowerment
for the disabled people. But the general view about what constitutes
disability remained static for a very long time. Thanks to the recent
spurt in the growth of scientific knowledge in this area and globalization
of the message of scientific activism, the concept of disability became an
important issue for re-examination and re-definition. In keeping with
current knowledge it was statutorily defined (in the U.S.A) as “a
medically determinable impairment which lasted or can be expected to last
for a continuous period of not less than 12 months and results in an
inability to perform substantial gainful activity".
In 1993 the United Nations declared
that the term “Disability” summarized a great number of different
functional limitations occurring in any population in any country of the
world. People may be disabled by physical, intellectual or sensory
impairment, medical conditions or mental illness. The U.N. has thereby
broadened the ambit of the concept of disability and specifically included
mental illness in addition to mental retardation as a cause of disability.
This authoritative statement has had an appreciable impact on the
academicians, administrators, legislators and other policy makers in
favour of mentally disabled persons. From a clinical point of view WHO
(1992) accepted disability as one of the consequences of mental and
behavioral disorders.
Disability in the context of mental
disorders may involve following areas of a person’s functioning:
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Activities of daily living including
health care, grooming, dressing, bathing, looking after one’s health etc.
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Social relationship including
communication skill, ability to form relationships and sustain them.
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Occupational functioning – ability to
acquire a job and hold it, cognitive and social skills required for the
job, doing home-work or studying as a student.
At present, measurement of the extent
and nature of disability in relation to mental illness is a crying need
for both academic and administrative purposes. Such measurements will
ensure scientific basis for further study of disability in relation to
mental illness. Objective and precise measurement of disability is also
necessary for determination of extent of social security benefits for each individual.
Early attempts to quantify disability
and social functioning were replete with many problems and failed to
arrive at an international agreement. WHO made a significant contribution
in this area of research. The instruments devised by the WHO (viz
Disability Assessment Schedule – DAS) proved to be commendable guides for
the objective measurement of disability. Since then a lot of work has been
done on DAS all over the world including India and a modified version –
DAS II has emerged. In spite of the good work done in assessing
psychiatric disability in its various dimensions, much remains to be done.
Now, let us look at the Indian side.
Given the lack of awareness about mental illness among the policy makers,
it is a pleasant surprise that mental illness was recognized as one of the
causes of disability in an Act passed by the government of India. This act
known as Persons with Disabilities Act (PDA) was enacted in 1995. It came
into force from February, 1996. Under this act disability means
blindness, low vision, leprosy cured, hearing impairment, locomotor
disability, mental retardation and mental illness. The act enjoins upon
the government, both central and state, to ensure that these disabilities
do not prevent individual citizens of this country from living a full life
and making full contribution each in accordance with his ability. It gives
equal opportunities to the disabled person, protects his rights and ensures
his full participation in the society. Needless to say, this is a
progressive piece of legislation. It creates opportunities and statutory
obligation for social justice to the disabled persons included.
Unfortunately, as soon as the Act came into force, many people challenged
the very basis of inclusion of mental illness in a statute on disability.
They believed that illness and disability are two different entities.
Another set of objections pointed out that mental illness, as defined in
the statute, includes mental conditions which may be either transient or
chronic. They argued that a wide canvas of mental illness will accommodate
heterogeneous persons and will encourage inequity.
An expert committee was formed in 1998
to evaluate these and other objections to the PDA (1995). The committee,
after careful consideration ruled that inclusion of mental illness is
justified, but found merit in the redefinition plea. In order to include
only those who deserve benefit under the law for disability caused by
mental illness, the committee suggested the following definition of mental
illness for the purpose of this Act.
Mental illnesses are “disorders of the
mind that results in partial or complete disturbances in the person's
thinking, feeling and behavior which may also result in recurrent or
persistent inability or reduced ability to carryout activities of daily
living, self care, education, employment and participation in social life.
These disorders would include schizophrenia, obsessive compulsive
disorder, bipolar disorder and moderate to severe depression of at least
three year’s duration with proof of continuous treatment”.
This is certainly an improvement on the
definition given in the PDA (1995), but falls short of the total need of
the affected persons. The crux of the question is not the chronicity of
the course but the consequence of the chronic illness. This consequence
must be measurable in terms of disability. Herein lies the need for a
comprehensive, reliable and easy-to-use instrument for the assessment of
disability.
Fortunately some useful work has been
done in India in this area. The instrument known as “Schedule for
Assessment of Psychiatric Disability" (SAPD) – adapted from the DAS devised
by the WHO – has been used in our country by many workers for research
purposes. This instrument may have the potential for use in other settings
as a screening tool for determination of disability in beneficiaries of
social welfare measures.
Hard data about the number of disabled
persons are scarce in our country. It has been estimated that about five
to six million mentally disabled people are in need of rehabilitation and
other social security benefits. It is heartening to note, in this
connection, that the National Census of India, conducted in
February-March 2001, took special care to enumerate the disabled persons
living in the family and outside it throughout the country. Significantly,
mental illness was recognized as one of the causes of disability. This
single step will ensure the collection of
reliable, comprehensive and easily retrievable data for future planning,
implementation and evaluation of programmes of social service and
empowerment for disabled persons.
All the social scientists and the
members of the medical profession should come together to put forward the
scientific facts regarding the affected persons and to strengthen the
hands of the government to codify the rules that ensure benefit with
dignity. The Law (PDA 1995) and the facts (derived from the National
Census) are two useful tools in favour of the disabled persons. Let us
rise to the occasion and stand up for this section of our fellow-citizens
in their fight for a fruitful life in the society.
The author has drawn freely from the following publications and expresses
his indebtedness to their authors and publishers:
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