People with physical and mental disabilities, in the words of Amartya Sen, “are not only among the most deprived human beings in the world, they are also, frequently enough, the most neglected.” They face life-long barriers to access education, work, play, social participation, marriage, and a life of ordinary human aspirations.
As excluded people whose human rights are most consistently violated, many of them today are investing a great deal of hope in a strong law, as a decisive instrument in struggles to secure and defend their rights. The current Persons with Disabilities Act 1995 is acknowledged to be out-dated and too weak, and a new law is therefore currently under consideration of the Government of India.
Many lively and important debates have arisen among disability organisations about many features of the proposed new law for disability rights. One of the most important questions relates to how disabled people should be defined.
Defining disability
Traditionally, disability has been defined mainly in terms of the medical impairment a person lives with. However, a person is not primarily disabled only because her vision is clouded, or limbs are feeble, or because she cannot hear or speak, or her mind is slow. She is disabled because society does not allow her to exercise the many abilities she does have, to live a life of relative self-reliance and dignity.
All over the world, it has been demonstrated, for instance, that mentally slow persons may perform as well or better than other workers in assembly line jobs; hearing impaired persons are more accurate in data entry tasks; and visual impairment is an asset in manufacture of photosensitive materials. If these persons still cannot find work, the barrier is not their medical disability, but the attitude of employers.
Therefore, the disability of an individual should not be evaluated merely in terms of the physiological difficulties that the person encounters, but the ways the physical and socio-cultural environment responds to these medical impairments. Such socio-medical scales of disability have been developed in other parts of the world, and the new law should make it mandatory for governments to develop these also for India.
Another contested debate around the proposed law pertains to the question of “legal capacity” of persons with disabilities: whether persons with disabilities, especially intellectual, psycho-social and multiple disabilities, are able to responsibly think for themselves; and whether they should be legally empowered to take decisions for themselves, or instead they should be “protected” by guardians who decide on their behalf.
The current legal position in India is that on a finding of “incapacity” in a disabled person, the guardian substitutes for the person with disability as the person before the law, and takes all legally binding decisions for the disabled person. The decisions of the person with disability have no binding force in law. The guardian is under no legal obligation to consult with the person with disability or determine his or her will or preference whilst taking decisions for him or her.
It is acknowledged even by government that this system, called “plenary guardianship”, is fraught with possibilities of exploitation and unfair dispossession of disabled persons, because guardians can oppose or distort a person’s will. But many parent groups still believe that some kind of appropriately safeguarded guardianship is necessary to protect these categories of persons with disabilities from exploitation, abuse and neglect.
The current official position takes a middle path in this debate, providing for “limited” guardianship, which prescribes that all guardians shall act in close consultation with the person with disabilities to arrive at legally binding decisions, in a system of joint decision making which operates on mutual understanding and trust between the guardian and the person with disabilities.
Critics, however, fear that this can, in practice, still result in legal capacity being denied. It does not protect a disabled person when there is a lack of agreement between the guardian and the person with disability. Guardians would tend to neglect the choices of the disabled person, given the vast difference in power between them.
Disability groups suggest that where local networks of disabled persons exist, they should be given a much greater role in ensuring that the supported “joint” decision reflects the true aspirations and best interests of the disabled person. There is also a need to have a stronger mandatory review system of these supported decisions, to ensure in such cases that there is no conflict of interest, exploitation, and that the will and best interests of the disabled person are indeed secured to the extent feasible.
Another hurdle
Another great challenge in drafting a law for disability rights is the great diversity between disabled people, not just in terms of the range of physical and mental disabilities, but also their socio-economic situations. It is critical to recognise poverty and social exclusion as crucial factors affecting the rights of children and persons with disabilities; and the many ways that disability intersects with other traditionally socially excluded groups such as the dalits, adivasis, and the Muslims, to create a complex matrix of vulnerability in the Indian context. Destitute women and men, single women, lower castes, homeless, and the aged who are also disabled women need specific social protection over and above any blanket social security given to all the disabled. The law should also contain stringent anti-discrimination provisions to lower barriers to their productive employment.
It costs a great deal to take care of persons with disabilities, therefore families with disabled members are effectively much poorer than those with the same income but no disabled persons. Such families deserve to be recognised to be poor (and food insecure) in official identification surveys of poor households.
No law in itself can alter the destinies of a group of persons as marginalised as disabled persons. But it can be used by organised collectives of disabled people to resist and ultimately reverse the intense exclusion and discrimination which characterises the lives of most disabled people.
