Whereas an empirical data gathered by the Muscular Dystrophy Association (MDA) of USA mentions the occurrence of MD to be one in every 2000 children, neither India as a country nor any of its states has any data about it. Even our national population survey conducted once in every 4 years that ought to specify the population of Persons with Disabilities (PWDs) along with the case specific nature of disability do not have any specific data on MD. Leave alone that even such data on PWDs are viewed by the Disability Rights groups as manipulated and downplayed. However, on the same scale of 1:2000 as stated by the MDA, if not more for the poor living conditions and lack of awareness, one could well imagine what could be the number of MD children in India with its 1.2 billion populations.
While the DMD patients in the developed countries could live up to 20-23 years of age, the DMD children in India die during 13-17. This indicates the very poor care & support system available in India. The ignorance of the public together with the reluctance of the state accounts for our children dying 10 years in advance as compared to their counterparts in the developed nations. Even the PWDs who are estimated to be nothing less than 15% of the total population have long been striving to realize their rights. The existence of the PWDs Act which was enacted in the year 1995, even before the UN adapting the UNCRPWD in 2006, doesn’t help them in a substantial way largely due to attitudinal variance on the part of the bureaucracy and the subsequent slack in implementation. Such a condition coupled with the fact that the DMD children would not live long predates the space of the MD patients who are relatively small in population and therefore rendering them further marginalized within the PWDs.
In a country like India, which has more than 30% of the world population of the poor and where the public health sector has already begun its with drawl and embracing private investments which are commercial and industrial in nature, one can well imagine the plight of the DMD children. They are three times vulnerable: as children (30% cases, as a girl child), as poor, and as disabled.
As the disease affects largely the males, women serve as carriers of the disease. Inadequate awareness about the offspring-nature of the disease often results in a family having many DMD children and / or their female as a potential carrier. In a patriarchal society like ours with its socio-cultural complexities, the social dimensions attached to the disease are graver than what we know.
Unfortunately, even the civil society initiatives focusing on MD are limited just to a few annual / onetime celebrity events. The written appeal of a peasant from the Bashi village of Mirzapur district in Uttar Pradesh, addressed to the President of India seeking permission to mercy kill of his 4 sons aged between 10-16, as reported in our major national dailies on 12th August, 2009 is only a tip of the iceberg regarding the plight of the MD children and their families in this country.