Nirmala Srinivasan critiques the 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 persist. 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. Other issues
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. Nirmala Srinivasan
September 2002 Nirmala Srinivasan is the founder of AMEND - Association for Mentally Disabled - a self help group for families and persons with mental and psychiatric disorders. She is also a member of the State Coordinating Committee under PWD Act in Karnataka. This article was originally published in January 2002 and comes to India Together by way of VOICES, Bangalore.