Meghalaya Parents Association for Disabled (MEPAD)

Our motto:- "Turn Your Wounds into Wisdom"

1. We take pleasure in introducing ourselves as a parents group from Meghalaya, India in this platform under 'about us'. When there are parents, the next generations are a possibility. By virtue of being father and mother, we are naturally the caretaker of our offspring even though when they attain their adulthood with various social roles to play.
2. To be more precise we are the parents of our disabled wards. An inalienable relation of two successive generations with their respective issues. Being the parents, our primary objective is to address at least two basic issues, one each from two successive generations as below :-
   • The first issue is the 'Aging to Disability': It is about the parents who have to pass through the aging process to their inactive part of their life of disability. and
   • The second issue is the 'Disability to Aging': It is about their disabled wards, who have to pass through the condition of disability to aging process leading to their parenthood with the first issue to further disability.
   • Since the parents wards relationship and the process between the 'aging to disability to aging' is inalienable, the parents roll is crucial in the matter of support, service and activism to address the best interest of their disabled children as well as the interest of the parents both, giving the institutional and legislative framework to it.
3. When the disability takes place to the ward, the effect of the loss or damage on happening of the disability at birth or after has a twin socio-economic target.
   1. The first target is the parent or/and the family member to whom such happening occurs. The parents are the first target because the consequences are faced by them first and;
   2. The second target is the person on whom such happening has occurred. The person with disability faces the second target because gradually since birth they used to get adapted to their condition even though or not they remain under the initial protection of their parents. Once they start to get exposed to the socio economic activities they realize that they are targeted to be excluded creatures of the socio economic environment. This is where the parents have to raise to the occasion in fulfilling the various rights of their disabled child or adult, compulsively to substitute the absence of appropriate measures being made available by the concerned authority.
4. Unlike the parents all over the world, the Indian families and parents have their own set of values recognized by India's rich cultural heritage, traditional and customary laws. These values are some time in conflict with the values of other culture and present day way of living prevailing in various part of the Country as well as other part of the world. There are many such values of the Indian family and parental position towards their wards that are as common as universal values and relevant for the interest of the disabled. The addition of social responsibilities to these parental values would not only eliminate many of such conflicts but place the Indian families and parents to a respectful, meaningful and commendable position. These values and social responsibilities of the family and parents towards disabled are extremely important to be recognized by the civil society for institutionalized approach of the parental services towards its disabled wards, welfare and protection of the inactive part of their life and effectively creating the inclusive society to provide a dignified and meaningful life to this section of the society.
5. Parents recognized that in the field of disability management considerable improvements and changes in the thought process of the society towards disabled are taking place, particularly in the developed countries. Though the developing country like India is following suit, the third world countries and the underdeveloped countries are far away in adapting such changes and even it is there changes are taking place in very unorganized manner or in the form of tokenism. Thus over the years, the unorganized changes in various fields is playing considerable impact on the parental effort in trying to address the aforesaid best interest for the benefit of the disabled. Some of the important changes relevant 'about us' may be as below:-
   1. There is a paradigm shift of the disability management from medical to social to right base. Our infrastructural and judicial system is far behind in accommodating the right based management of the disability. Parents or family members are the only substitute in addressing the need of the rights of the disabled.
   2. In order to address the right based management our Parental movement is now focusing on establishing four basic rights for their disabled wards. They are the right to cure, right to support, right to rehabilitate and right to life long care.
   3. The perspective of the rights is changing from 'the rights of the parents' to 'the rights of the child' in the matter of possession and access of the child. Our parental movements are taking active social responsibility in removing the discord and disintegration as far as possible within the families for the best interest of the disabled child.
   4. From guardianship to support decision making for those who cannot advocate for themselves.
   5. From Joint family system to nuclear family system that is fading away the age old Indian value system that has given high importance on providing care and protection for parents and elderly, forcing the parents and elders to isolation and exposing them to various kinds of problems such as lack of physical, social, emotional and financial support. Thereby making the parents and the elders more obstructive in giving the parental services to address the rights of the disabled.
   6. The demography of matrilineal society is gradually changing to patriarchal nuclear family in the State of Meghalaya.
   7. The age expectancy has considerably changed form From 31 years during 1961 to 67 years as on 2011 thereby the percentage on total population of the Sr. Citizen is increased from 7.5% on 2001 to that of projected to go up to 12.4% during 2026. The longevity in life expectancy of the parents is increasing and thereby the dependency is increasingly getting vested in the socio economic and professional incumbency of their children in absence of the appropriate social security and other age old support measures is made available to these parents by the Government.
   8. Above changes are some of the glimpses amongst the overall demographic changes, lifestyle change, various materialistic changes from organic cultivation, use of pesticides to surrogated motherhood to genetically tailored child birth with no stopping.
   9. It is now time that the parental service be changed to a right based service that the parents need to provide.
6. The world apparently seems to be vertically divided over the disability issues considering various factors like social, religious, prejudicial, superstitious and political untouchabilities etc. In this regard various inclusive programs are gaining momentum to reduce such differences. But the parents of the disabled find that there are certain aspects where such divisions are nonexistent. These aspects are everlasting and reflect in similar way across the rank and file of the parents that shall perhaps never change and remain subtle in mind or otherwise in the parents. This is the area from where the parents of the disabled gain the strength thereby require the recognition of these aspects for the parental empowerment, so far as addressing the interest of the disability is concerned. Some of these aspect whether or not we recognize it, are as below:-
   1. There may co exists disabled and nondisabled children to same parents
   2. The relationship between father mother daughter and son is inalienable even after death and shall remain so for generations to come.
   3. A child born to the parent brings a new generation, a new horizon of prospect, a heredity, a divine happiness, endless hope, planning and what not but the most valued in India till date is the Social Security to the parents followed by heredity.
   4. The birth is always associated with the parents. But it can be a hard reality than myths that the parents may, knowingly or unknowingly, have to witness their child's births in three different forms. The witness can encompass any parents of the world, whether or not the child is disabled or nondisabled. Let us witness these three form of birth of a child and then let's try to deny its reality, if one can as a test check, as below:-
      1. The first birth of the child takes place in the dream, a pre parental expectation which is free for all.
      2. The second birth of the same child comes as a reality from the mother and welcomes with glorified start of parenthood having subtle expectation of social acceptance of the new born, though for few it remains limited to first birth.
      3. The third birth of this child takes place in the memory of the parents when the child is separated physically or eternally, the cause of which attains acceptance of the parents under compulsion or contention. The parents can never dream of it nor welcome it but resists it tooth and nail till their last breath though may compromise with physical separation for certain consideration.
7. The Parents have to provide day to day requirement to their disabled child covering the health, education, unemployment support, rehabilitation, care giving for each day of delay in implementing the policy, providing infrastructural support, budgetary allocation for various schemes and have direct bearing on the loss of age for both the disabled wards and their parents without having any indemnification. This is why the parents of the disabled have to take 'extra effort' to play the nodal role for coordinating with various service providers, departments, authorities to ensure that some benefits can be obtained and provided to their disabled children. On the counterpart the parents having nondisabled child and society in general need not have to undertake the kind of 'extra effort' that are required to be taken by the parents of the disabled.
8. The roles, duty, responsibility of the NGOs or society or community and the parents of the nondisabled children are different from the roles, duty and responsibility of the parents of the disabled children towards the persons with disabled. But in the field of disability management the parents of the disabled are generally viewed similar to that of society as a whole. The extra efforts and responsibility that are required to be taken up by the parents of the disabled in absence of the requisite support for their disabled child are in compulsive form, where as the efforts of the society in general in towards the disabled are more or less in optional form. This is where the responsibility of the parents of the disabled is required to be recognized and empower them to coordinate with the various authorities, that will be highly effective in implementing various disability related schemes and projects, who are be the biggest and widest spread coordinating force.
9. To the parents it shatters everything on knowing the above happening and the passage of time drives the parents through fear, denial, anger, frustration, guilt, grief and mourning the loss of "Perfect Child". The state of the world changes permanently, as it really is, rather than the parent might want it to be. It requires the parents to pass through various stages to accept this harsh reality of the happening of the disability to their beloved child. It is so severe on the part of the parents that very few parents can accept this harsh reality and regain the strength to undertake the social responsibility.
10. The parents have their own body and mind language. Some section of people says special parents to special child. The fact is that the parents are the complete Institution in itself. The Institution which is recognized in various faiths, traditions, customs from time immemorial but found no appropriate recognition in present day subjective and judicial system