Disability in India:  Family responsibility or social issue?  Signs of a gradual paradigm shift.

By Anuradhua Mohit (nab@vsnl.com)

Some background and examples

     It was the year 1995. The preparation for passage of `Persons with Disability Act' for Indians was in full swing. The National Federation of the Blind had flagged off the campaign in 1971 demanding legal protection to the rights of  disabled persons. A long struggle of 14 years had consolidated sufficient support around the issue to the point where we anticipated actually  having the act passed. Yet, we were quite apprehensive till the last moment!

     About two months prior to the enactment of the Act, a disabled activist friend shared the news that the Secretary in the Ministry of Law, under whose guidance the draft act was to be vetted, was a father of a child with disability! This news indeed brightened up our spirits. But, one among us was totally surprised at discovering this.  I vividly remember my friend Ali's confused face and his statement, "M---- and I have known each other for more than a decade but I did not have even the slightest idea about this child of his!"

     Let me describe another experience of a similar kind. One day after winding up a fruitful meeting with the newly appointed Secretary in the Ministry of the Social Justice and Empowerment, while walking down the corridor, a bureaucrat friend by my side assured me of the Secretary's all out support to the disability cause. He was also confident about the vital role that the Secretary would play in the implementation of the Disability Act. I was naturally pleased and innocently inquired whether any serious discussions had taken place for implementation of the Act. My friend replied, "Many rounds of discussion and several initiatives are expected, as the secretary is deeply concerned with the subject due to personal reasons too"!

     A year later, I received a phone call from the same bureaucrat inquiring about open learning system for disabled students. This time I assumed that efforts to integrate disabled persons in open learning were perhaps on the agenda. Contrary to my assumption, the friend on the other side in disjointed words mumbled, "No, it is for the secretary's learning disabled child "! (And I was also cautioned to keep it confidential)

The Indian family pride

     These typical attitudes of upper and middle class Indians compel one to review the Indian family system, particularly its response to disability or financial or emotional situations of their members.

     Typically, the pride and honour of Indian families is also linked to its capacity of addressing the needs of its members in the manner described above. Whether it is a young widow or an elderly member with no income or be it a member with disability, they are all nobody's concern but that of the family. Social, emotional, financial or other problems of these disabled and/or dependent members are kept within the proviso of the family. Not only because of a `stigma' attached to it but, also because the family's pride relies on its ability to manage these problems within its own means and capacity. Sense of pride in such matters is often gained from admiration expressed in these words, "Oh! that family is so well integrated that even their next door neighbours could not get a clue of their child's disability". And revered are such families!

     On one hand, the credit goes to the family system and its ability to manage a variety of challenges and disabilities by itself; but on the other hand, this very quality of the family has kept the common concerns of the 10% of India's population who are disabled at the level of `Individual problems'. The upper and middle class Indian family and its individualistic approach to this type of common challenge has prevented transformation of `Individual issues' to `Social issues'. Disability has long been perceived as an `individual problem', therefore resulting in the indifference of the society and the state.

Poverty brings about a different scenario

     Interestingly, the scenario in the lower class and lower caste Indian families is quite different. Here the garb of pride and honour has not covered over the real facts of life. In these poor Indian homes, almost all members of the family are engaged in some remunerative activity. Their existence depends on their job, which gets them barely two square meals a day. Here, each member has to work for existence and `survival of the fittest' is the governing principle. Under such circumstances, the disabled members are often left to their own fate or at best, institutional confinement is resorted to as a solution.  At this extreme end of the economic spectrum, families do not hesitate to abandon their disabled children, or look for institutionalised arrangements. Infact, the existence of shelter homes and sanatoriums, asylums etc. has been sustained by the needs of this section.

Terminology concerning institutions

     I must mention that it is a matter of great concern that the institutionalisation of systems is often wrongly equated with institutions like asylums, and sanatoriums.

     At the risk of digressing a bit, reader's attention is sought here to the institutional arrangements provided by the society for disabled persons in early days. These `confinement- like' institutions did grant food, clothing and shelter  for their sustenance. But at the same time, they were totally isolated and almost imprisoned the disabled resident, leaving hardly any chance for contact with the outside world. Owing to such nature of these institutions, people abhorred even the very expression `institution'.

     Still there is hardly any need to emphasise the importance of institutionalisation of arrangements in today's time because without these one could never achieve a new level of development. Be it society, judiciary, government, media, communication networks, or foreign policy, each of these is a vital component of a large system which has provided increased stability and quality of life to the citizens of world society. In the absence of good institutions and systems, no country can even dream to fulfill the basic and fundamental needs of its members.

     Yet, the talk of specialised institutions and institutionalisation of systems for integration of the disabled is not seen in correct perspective. If a country needs good engineers, doctors, soldiers and administrators, I'm sure the need of good universities and schools cannot be denied. Similarly, if due to disabling conditions, a person requires a specially designed lab, a classroom or a training institution, then it must be provided without having any bias. The mistakes of the past should not deprive us from having modern institutions and systems corresponding to the requirements of the disabled population. In the absence of institutions and institutionalisation of sustainable systems, the disabled members of the upper and the middle class would continue to live in the isolation of the four walls of their families.

     In the same way the disabled members from the economically poor homes would continue to resort to isolated `confinements', which unfortunately still exist particularly in the developing countries where the number of people living below the poverty line is quite large. Asylums with all the comforts or without comforts, can only be equated with prisons; and the disabled inhabitants not only deserve freedom from these prisons, but their families also need to be relieved of the obligation of providing support from cradle to grave to the members having disabilities.

Transforming the individual problem to social issue

     Thanks to the people's organisations and communication networks that are endowing both empowered and the disempowered families with a new knowledge of transforming the individual problems to social issues. This alone would pave the way for social response to a social problem, which has all these years, for several reasons been perceived as `personal' matter.

     If I could quantify the prevailing situation for the purpose of comparison, the results would look something like this:
 

     The figure shown above explains that the balance is tilting in favour of self-help organisations who definitely demand `social' attention and solution to their concerns rather than `individual' sympathy.

     Note: The mention of the secretaries A and B quoted in the beginning of the article is merely a device to showcase the facts. Maligning anyone's personal or professional reputation is not the intention in any respect.