Persons with Disability Act, 1995.
September 2002: The Persons with Disabilities Act (PWD),
1995 has been a landmark legislation for the disabled in India. The amendments
to the Act are yet to be tabled in Parliament. This article focuses on
the aspects of the Act that are related to mental illness (MI) and provides
recommendations aimed at making it an official instrument for equal opportunities,
participation and protection of rights Act in its true sense. As an affected
parent and caregiver, I am indebted to the Government for bringing the
mentally ill to the forefront of disability action. But there are some
serious flaws in the Act that have to be set right to ensure equitable
distribution of benefits to all.
Though Mental Illness has been included as one of the seven disabilities,
the Act as a whole shows very little understanding of the nature of the
disability and current developments in the field. It appears that the
recognition is more by default rather than intent. The very definition
of Mental Illness (MI) is more by elimination rather than explanation.
For example, by stating that mental illness is other than mental retardation,
one wonders whether one should apply the definitional criteria to all
mental disorders including epilepsy and disabilities such as dyslexia?
It is learnt that the Amendments to the Act take care of definitional
issues by adopting an inclusive rather than an exclusive approach. But
until the amendments are incorporated, the ambiguity of definition will
The Act defines a disabled person as one who is
"suffering from 40% or more disability". However, as far as MI is concerned,
this quantification is a mystification because such a tool is unavailable.
So, if I as a parent of the affected want to derive benefits under the
Act and approach a psychiatrist for a legally approved disability certificate,
there is none available. By being deprived of access to a certificate
of disability, the discrimination to MI is inherent in the very definition
of disability envisaged by the Act. It is believed that the Indian Psychiatry
Association under the initiative of SCARF (Schizophrenia Research Foundation)
is working on such a tool, that can measure 40% of MI linked disabilities
but it is still at the field-testing stage.
Committees and Representation issues
Though the Act recognises seven disabilities, the representation allowed
in the co-ordinating committee and executive committee at the central
and state levels are restricted to only five members. In other words,
the selection of the five should be such that they have full and practical
knowledge of all or most disabilities so that justice can be done to all.
Lack of sufficient understanding can spell disaster, especially for a
disability such as MI where as it is, very few officials are familiar
with the difference between Mental Retardation (MR) and MI. So unless
each disability is represented individually, the chances of MI being dropped
by the wayside cannot be ruled out in the absence of representation granted
to it in the Committees.
Conceptually, the Act covers both benefits and rights of the disabled
under three main sections- Prevention, Rehabilitation and Integration.
In the case of MI, treatment and prevention of relapse is crucial. Seen
strictly from an official point of view, the treatment aspects pertain
to the Ministry of Health while rehabilitation falls under the purview
of the Ministry of Social Justice and Empowerment. So unless the composition
of the committees are structured accordingly, MI is likely to be between
the two. Sub-committees for monitoring the Act, especially for MI, are
required both at the Central and State levels.
The relevance of the above argument is clearly
seen in the clause pertaining to employment (CH 11, 33). The Act has specifically
earmarked job reservations of 3% for the conventional disabilities (1%
each for visual, hearing and orthopaedic impairment). It is learnt that
the amendment to the Act has further expanded this to 5% with the additional
2% for MR, cerebral palsy and autism. Besides reflecting blatant discrimination
to MI, it shows deplorable ignorance pertaining to the needs and rights
of the disabled. Global experience and research in several nations shows
that persons suffering from MI have shown a remarkable rate of functionality
after being treated with new drugs. Hence, the paradigm is shifting from
illness per se to rehabilitation and integration.
The PWD Act unfortunately, turns out to be an instrument
of injustice and discrimination albeit unwittingly. According to the chairperson
of the Amendments Committee, MI missed this opportunity for employment
rights because of the absence of a well-informed advocacy platform that
coalesced into a lobby! If disability justice is based on lobby politics,
do we conclude that the government is a willing partner to it?
On the other hand, caregivers and patients have
made innumerable representations. Despite busy schedules, psychiatrists
along with other mental health professionals and various advocacy forums
from all over the country took serious initiative to bring the lacunae
to the notice of law and policy makers. Upon the request of the Association
for Mentally Disabled (AMEND), the NHRC (National Human Rights Commission)
also wrote to the ministry. So far, this hasn't brought about any change.
But this 'ineffective' advocacy lobby is not about to pack up and leave.