The evolution of the disability rights movement (DRM) in India spans over four decades. Voices began demanding the rights of people suffering from disabilities in the early 1970s; it was, however, nowhere close to being a movement at that point. The various demands from groups and individuals were significantly scattered.
The 1980s witnessed the consolidation of demands from various groups and their organization under a cross-disability umbrella, representing the interests of the disabled. Many NGOs started operating in the disability sector during this decade and this subsequently provided further momentum to the DRM. After a series of petitions and protests, the government passed the Persons With Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 (or PWD Act), which reserved three percent of government posts for those in the PWD category. So the year 1995 became a benchmark year for the DRM, which stands for the beginning of a new era altogether, in which people suffering from disability found visibility in educational institutions and government services.
In the new millennium, the United Nations adopted the Convention on the Rights of Persons with Disabilities in 2006. India signed and ratified this convention in 2007. By then, there was a demand for an increase in the reservation for the PWD category by various groups working on disability issues. By 2012, the Union Government of India came up with a disability bill, and after some amendments in the original draft, the bill was tabled in the parliament the very next year. After a wait of over three years, the Rights of Persons with Disabilities Bill, 2016 was passed by both houses of parliament just last week. More than 26 million differently-abled persons in India are waiting anxiously to see the bill officially become a law.
Overall, what started as scattered demands for rights for people suffering from disability has today developed into an issue area that is the subject of many academic works. Though many obstacles still exist in the path of the DRM, the achievements to date are worthy of praise and they need to be highlighted.
Initial phase of the DRM: The 1970s and 1980s
Until the 1970s, most of the people who suffered from any kind of disability were considered as outcasts from the mainstream society and were looked down upon. To put it bluntly, though it may sound politically incorrect, any disabled person was treated like dirt in Indian society. Most of these people were either seen as beggars or in better cases they were associated with the field of music. Even the system thought of them as a liability; these people were considered to be of little use to society and hence their concerns were severely disregarded. Many people thought of disability as the result of someone’s previous life’s sins and thus held them responsible for their present condition. This absurdity led to various forms of injustices in India.
In contrast, things were changing rapidly and drastically in the Western countries at this time. In the West, the disability rights movement had gained momentum in the 1950s, and by the 1970s it had begun challenging governments with a much greater force. In India, such demands had only started to emerge. Even in Western societies, people suffering from disability were not exactly treated as they should have been. The world was still only 30 years removed from Adolf Hitler’s attempt to eliminate the disabled population in Germany, due to his belief was that disabled persons were of no economic use.
In the West, things started to change after World War II, when thousands of soldiers returning home were left with several kinds of disabilities. These soldiers became an initial source of the DRM and they even saw some success in getting their rights, mainly because these soldiers were considered heroes of the war and thus their demands garnered immense public support.
No such thing happened in India. Most offers of assistance from Indian society toward its disabled population were viewed as charity rather than providing legitimate rights to PWD. Even the families associated with a disabled person were looked down upon and scrutinized in many ways by their relatives and neighbors. In many cases, this led to families disowning their disabled family members; disabled children were all too often left in orphanages. A severe kind of “shame” was associated with disability.
Throughout the 1970s and 1980s, the DRM remained largely a battle between a few individuals against the system and society. These individuals were very few in number since few families had the capacity and will to support their “differently-abled” children. The media was also completely mute over this since this issue was never interesting enough to create the hype that other issues could.
For politicians, the rights of disabled persons were a non-issue. Disabled people were not considered as a “vote bank” as they were people with no voice. Unlike the caste movements and women rights movements, the DRM had no leader. This dearth of leadership caused a very long wait for the movement to gain any kind of success.
Also, the society treated those who were born disabled differently from those who became disabled after some injury. Throughout the 1970s, many NGOs across the country were running with the help of foreign aids and charity from the economically well-off sections of the society. The disability sector was ruled and controlled by NGOs with either parents or professionals at the helm of affairs. They worked in silos, with no interaction or connection with each other. Most of them worked only for a particular disability, for instance, NGOs for the visually impaired, for the hearing impaired, for persons with intellectual disabilities, and so on.
Baba Amte, a renowned social activist, dedicated his whole life for the rehabilitation and empowerment of poor people suffering from leprosy. He was a very prominent figure who inspired many others in sensitizing people toward this cause. This resulted in many people realizing the importance and coming forward to become a part of DRM.
The 1980s saw a shift in the policy frame with the welfare model being transformed into a developmental model. This was a phase where the disabled persons, hitherto treated as recipients of charity, became participants in the developmental process. By the end of the 1980s, people also started focusing on disability on medical grounds, with the objective of trying to reduce suffering via medical treatments, medical equipment, and technical help, to make the lives of disabled people “normal.” But these ideas were practiced only by a limited section of the society, which was literate, sensitized, economically well-off, and modern in a real sense.
When the United Nations announced 1982-1993 as The Decade of Disabled Persons, it marked another shift in the entire debate on the goals of rehabilitation. The Rehabilitation Council of India was set up by the Government of India in 1986 to regulate and standardize training policies and programs for the rehabilitation of persons with disabilities. The very next year saw the Mental Health Act (1987) come into existence. The Mental Health Act is a civil rights legislation that focuses on regulating standards in mental health institutions.
Despite the existence of this Act for the protection of the person, property, and management of persons covered, until recently, most mentally ill persons were consigned to jails. Those living in mental health institutions were no better off, since the conditions both in prisons and in mental institutions were far below the stipulated standards.
The last decade of the millennium brought drastic changes in the disability sector of India. A distinct self-advocacy movement of people with disabilities, which started during the 1970s, began campaigning for protection and recognition of their human rights. It advocated the enactment of a comprehensive legislation with a rights-based approach, placing special emphasis on social and economic rights.
The government had recognized the need for such legislation in 1980. But since the legislative power regarding disability was kept on the State List, the matter could not be pursued. However, Article 253 of the Constitution of India enables the Parliament to override the federal distribution of powers and to give effect to a treaty entered with a foreign power or an international body, even if the matter of legislation relates to an entry in the State List. With the signing of the Proclamation of Equality and Full Participation of People with Disabilities in the Asian and Pacific Region, the PWD Act was enacted by Parliament in 1995.
The PWD Act was focused more on rights. The substantive provisions of the Act relate to prevention and early detection, education, employment, affirmative action, non-discrimination/barrier free access, research and manpower development, and institutions for persons with severe disabilities. After the PWD ACT, 1995 was enforced, a 3 percent reservation (comprising 1 percent reservation each for those with locomotor disability, hearing disability, and visual disability) was offered to the PWD category in educational institutions and government services.
Different kinds of disability in the Act are classified based on medical grounds and not on social perception of disability. Critics of the PWD Act say that the Act is replete with numerous flaws, as it was passed by Parliament without a full length debate. They say that the Act lacks teeth and provides ample escape routes to the concerned government.
The formal recognition of discrimination on grounds of disability is a recent development. Laws enacted 20 years ago generally did not include disability in the list of prohibited heads of discrimination. For instance, though the Indian Constitution in its Articles 15 and 16 prohibits discrimination in the matter of employment and access to public facilities on grounds of religion, race, caste, sex, and place of birth, it is silent on disability. In fact, until 1995 the Service Rules prevented the entry of persons with disability in higher grades of service.
The New Millennium: The Story After 2000
Disability status was not canvassed in India’s census from 1941 to 1971. Thus, PWD were excluded from the population census until the 1980s. The 1981 census included information on three types of disabilities, an utterly inadequate semblance of inclusion. Again, persons with disabilities were totally left out from the purview of the 1991 census. This resulted in growing demand by PWD for their inclusion in the population census of India.
After a prolonged advocacy, a question on disability was finally included in the 2001 census questionnaire at the last minute. With minimal awareness and training, the enumerators found that 2.1 percent of the total population of the country consists of PWD. India finally accepted that 21 million of its citizens were PWD. However, persons belonging to many more disabilities, including persons with mental and intellectual disabilities, were completely excluded (only five categories of persons with disabilities were included in the census).
Disability rights activists strongly dispute the census 2001 figures on the number of persons with disabilities on various grounds: the non-inclusion of many disabilities, the improper training of enumerators in identifying persons with disabilities, etc. Interestingly, many countries, including some developed countries like the United States, Britain, Australia, New Zealand, and some of India’s neighboring countries, have a far higher percentage of PWD in their population than India does. Evidently, a great deal depends on how disability is defined.
The 2011 census revealed that over 26.8 million people in India suffer from some kind of disability. This is equivalent to 2.21 percent of the population. Among the total disabled in the country, 14.9 million are males and 11.8 million are females; 18.6 million PWD reside in rural areas while 8.2 million reside in urban areas. People who advocate against the likely increase in reservation for PWD from three percent to five percent point out that people born with disabilities are growing fewer in number, particularly after advancements in the field of medicine, when compared to those who become disabled after their birth. To cite one gruesome example, human traffickers force able-bodied people (mostly children) into the business of begging by kidnapping and then cutting off their limbs, making them disabled for life.
Looking at this situation and the demands from civil society, the Union Government came up with a National Policy on Disability in the year 2006. This was a comprehensive national policy on disability covering critical areas like education, employment, support services, access, social security, etc. However, this policy also needed to be comprehensively modified in the light of the UN Convention. Somehow, the national policy is nearly silent on the civil and political rights of persons with disabilities. Unfortunately, most of the states of India do not have a state-level disability policy in place yet, though a few states are in the process of evolving such a policy.
The Current Decade and the new Disability Bill
The Rights of Persons with Disabilities Bill (RPWD Bill), drafted in 2011, was meant to be an enactment to codify India’s obligations under the UN Convention on the Rights of Persons with Disabilities (UNCRPD), which it ratified without reservations. There was a committee set up in 2009 by the Ministry of Social Justice and Empowerment to draft a bill to this effect. In accordance with the UNCRPD, the committee included different people with different disabilities to draft this bill.
The Rights of Persons with Disabilities Bill, 2014, defines for the first time the meaning of disability and extended it from seven to 21 categories. Categories include sickle cell disease, thalassemia, muscular dystrophy, autism spectrum disorder, blindness, cerebral palsy, chronic neurological conditions, mental illness, and multiple disabilities.
Based on vital amendments, the bill, for the first time, represented rights-based disability legislation. Its focus is on transforming the meaning of disability, expanding its definition from the existing medical framework to a social one. The amendments included hiking the quota of government jobs from three to five percent and underlining the need to make private companies responsible for creating a friendly workplace environment for employees with disabilities.
The bill has been approved by the Cabinet of Indian Government and, as of December 16, the parliament of India. It only await the signature of the president. Once that happens, the bill will become a law and will replace the 1995 disability law.
This would have a huge impact on India, which according to some sources has the largest disabled population in the world. The World Bank suggests that there are around 80 million disabled people in India. The actual numbers are contested but it is true that India has a fairly large share of the global disabled population. The disability law will bring long-awaited hope and change to the lives of persons with disabilities in India.
Martand Jha is a research student at the Center for Russian and Central Asian Studies, Jawaharlal Nehru University, Delhi.