2FAMILY’S PERSPECTIVE ON SOCIAL INCLUSION | Pauzagin Tonsing Centre for Community Initiative (CCI) Churachandpur, Manipur
3‘What sins have you committed to be cursed with a disabled child?’ “People said to me,‘What sins have you committed to be cursed with a disabled child?’and I stay clear of the society to protect myself and my child.”6 years back, during an informal group meeting comprising of parents with disabled children, one mother narrated her expereince and difficulty faced in mingling with other due to her daughter. Her daughter was with hydrocephalus.1. Others took as a retribution of past deeds,2. Mother’s protectiveness.3. The child has no chance of getting together with otherA society has three factor that could not include persons with disabilities:AttitudeEnvironmentInstitution
4Born as individual but come together and form a group – family, friends, society, community, etc. Forming group means belonging, sharing, participating, adapting, connecting, opportunities, security, etc as we are social being
5In a society where a person with disabilities is looked upon as a retribution for past misdeeds, how would the person and his family ever have a place in a society? How would they fit all in in one size fits all society?
6To expect the unconditional love of parents and family from a society which has not been sensitized on the issues of disability, more often than not leads to disappointment and frustration for the parents and family members.Parents’ love for their child is unconditional, whether they are abled or disabled. Nay, if disabled, the love grows more total. However to expect the same un-conditionality from a society which has not been sensitized on the issues of disability, more often than not leads to disappointment and frustration for the parents and family members.Without sensitizing the society, they are not fit all in one size fits all situation, though we are social being
7It was upto the family to help create an inclusive society for their children.
8However, some parents of persons with disabilities have a concept that they are to be pitied and need others help, in which case they usually feel “unable” and have a low sense of self-esteem.
9as a variant of ‘-ability’. Yes, the experiences of living with a differently-abled individual is a uniquely subjective one. The family’s role in creating an inclusive society will depend on whether they view disability as an impediment oras a variant of ‘-ability’.
10Only then can many many more try to do something... With parents viewing disability as a variant of ‘-ability’, they must get the world to try feel and try imagine as parents and family do!Only then can many many more try to do something...
11I, for one, a doting father of a boy with visual impairment of 7 years I, for one, a doting father of a boy with visual impairment of 7 years ... for all my care and closeness know as good as nothing of what my dear son is going through, and nothing whatsoever about what he wants out of life!But, let me take you to the case of our struggle for including us in the society
12impedimentTo some who are new to the region I am going to talk about, my home state is Manipur in the northeastern region of India. My home district is Churachandpur bordering with Myanmar/Burma. It’s a tribal dominated area.. A population of 271,274 in 2011 of which male and female were 137,748 and 133,526 respectively. Average literacy rate of Churachandpur in 2011 were though western education reached 80 years back % lives in rural and 6.40 in urban.In a society which strongly adheres to its religious values, this region of North-East India has always had, until recently, a closed mind-set regarding disability, as something to be looked upon as an embarrassment or as tabooLET ME TAKE YOU CLOSER – ITS ONLY FIVE HOUR JOURNEY FROM IMPHAL TO AHMEDABAD BY AIR.
14In 2006, we start visiting other parents of children with disabilities at their home. Then, we began an informal group meeting, who shared and discussed the various hardships we faced in caring our child.
15The group provided the much needed moral support and confidence where we found comfort in our common experiences.
16Parents who look disability as an ‘impediment’ are counselled. A campaign was begun to make parents break away from their fear of society’s scrutiny and put their child’s needs first.Parents who look disability as an ‘impediment’ are counselled.
17As there is no service or support where we can seek advice in the District, we empower ourselves by obtaining information through books, internet and random mails to various organisation who gave us valuable advice.One such valuable advice I got was from Debbie Gleason, from Perkins International Asia/Pacific Region coordinator, who introduced me to the retired Director of Voice and Vision India, Mrs. Reena Bhandari and has set me on the path of being a torch bearer for Voice and Vision in my region.
18So we approach CBOs through various means Later, it was felt necessary tomake the larger society aware of our experiences.make people aware of the challenges that we are facingmake them empathize with our circumstances, and not to stigmatizeMake them understand disability,So we approach CBOs through various meansLater, it was felt necessary to make the larger society aware of our experiences. If we could make people aware of the challenges that we are facing and make them empathize with our circumstances, it will lead to a better understanding of disability. So we appraoch CBOs through personal approach, programmes with them, public campaign, media, etc
19Yes, they were looked upon with sympathy and kind words and words like ‘blessing in disguise’ were used to infer to them.It has impact to some extend though CBOs and civil society has limitation.
20By 2009, things became less bleak as a result of the campaigns and people became more receptive to the idea that it is a part of their social and moral duty to help persons with disabilities.Around this time, since there was no school for children with special needs, I enrolled my son, Malsawm in a regular preparatory school run by my friend. My son, as well as the teachers had a hard time coping with each other because teachers were not trained for special education. This brought home to me, the acute need for a school which caters to the needs of a disabled child.
21In 2010, one major break through was the help extended by the church which is the single most powerful institution and most influential in the society.
22clipTaking an opportunity as it coincided with World Disability Day or International Day for Persons with Disabilities, we made a request to the organiser of Youth Conference to give us special item during the program. For the first time in the District, Persons with Disabilities are reluctantly included in a major conference where more than 20,000 people attended. But the problem here – though they give us time for 20 mins at first, they cut down to 5 minutes, no ramp was built on the dais, etc
23As the parents became more aware of the need of a school where we can send our children, by the beginning of 2010, around 10 parents who were genuinely interested in starting such a school began a campaign
24The traditional perception of disability as opposed to the scientific explanation still persisted within the community and the campaign for starting a school was looked upon with scepticism and ridicule.
25THE MALSAWM INITIATIVE (A School for Children with Special Needs) However, with the support and constant encouragement of intellectuals with liberated thoughts and the District Administration, a school for the ‘malsawmte’ (blessed ones),THE MALSAWM INITIATIVE(A School for Children with Special Needs)was started in 2011.
26So, i would not be standing here had not God blessed me with Malsawm, And i stand here because of parents of malsawmte who come forward and join hands to fight for their childrenDue to their effort society today is, to some how, aware of their moral responsibilities towards malsawmteAnd make malsawmte as one of them.
27To conclude,People said to the mother that they would take the girl for practising choir while she is not in the school and take her to church on Sunday.
28‘What sins have you committed to be cursed with a disabled child?’ “People said to me,‘What sins have you committed to be cursed with a disabled child?’and I stay clear of the society to protect myself and my child.”