Sunday, April 19, 2009

Disabled or differently abled?

This piece came in the 'grassroots'-the old and famous development journal in April 2009 issue
http://pressinstitute.org/scripts/grassroots_index_popup.asp?id=352
Disabled or differently-abled?
By : Pradeep Baisakh
Orissa
Twenty six-year-old Buddhadev Nayak from Rangamatia village in Mayurbjanj district of Orissa suffers from muscular dystrophy. Muscular dystrophy is a muscular disease by which the body muscles get weaker with each passing day, making the person unable to move his body parts. By implication, he gradually enters into a state of physical handicap. It started at the age of ten when he found that he was not fit enough to go out with his school friends to run and play. Belonging to a poor family, Buddhadev could not do much for the treatment of the disease. (Muscular dystrophy has no such effective treatment in medical science). Despite the disease he somehow managed passing matriculation. But as he was growing weaker and weaker, his movements were shrinking and he was ostracized from his family and society, who treated him as a liability. He started using a tricycle for movement as his legs stopped functioning. The sense of helplessness also grew in him and he treated himself as really ‘disabled.”

One day, he came in touch with the social workers of Sadhana, a local NGO who works for differently-abled people. With the inspiration and support from them, Buddhadev took the initiative to contact differently-abled people from the area with the objective to form a self help group (SHG). Eventually a group of twelve people of different forms of disability was formed in the name of “Sampark Bhinnakshama Swamshayak Sangha” (Sampark differently-abled self help group) in March 2006. A senior lady Nishamani Nayak was made the president of the group and Buddhadev the secretary. Each member started contributing a sum of ten rupees a month to the group bank account and decided to meet at least once a month in the group. Their individual level of helplessness, the agony of being disabled and being a liability to the family, added by the experience of being ‘looked down upon’ by the society was overcome by the group solidarity and group bondage. Emboldened by the group strength and some savings in hand, the group members decided to start some small business and inch towards financial self sustainability. At the group level they started with Mahula business, and at individual level, the members stitched ‘sal leaves’, made brooms of ‘Sabai grass’ and sale.

Starting from here, there is no looking back for them. Now, with the recommendation of the block, Buddhadev has got a personal loan of Rs. 25,000 to start a grocery shop. Elated with the change in his life, Buddhadev says “I was quite depressed without seeing a purpose in my life. The idea of forming a group gave me hope and confidence and now I own a shop for supporting myself and my family.”

Forum for emotion sharing

The members of Sampark SHG started with sitting once in a month for the group meeting. But gradually, the frequency of meetings increased, and it became a practice for all the members to sit every evening in the house of President Nishamani. What is the purpose of having daily meetings? Nishmani answers, “We speak about our problems; we share our agonies and happiness amongst ourselves. Who else is there near whom we can share our emotions? The belongingness and fellow feelings has brought us closer to each other.” Another member of the group adds, “We just like to sit with each other.” They just do not waste time in gossips in every evening. They do their regular work like stitching leaves etc and discuss about their problems and same of their villages and plan their future course of action. They are now regularly participating in the Palli Sabha and Gram Sabha meetings.

Example Setters

Buddhadev and his fellow members in Sampark SHG are no longer the persons to be looked down with pity; rather they are example setters for others. They started tracing similar differently abled people in other villages and persuaded them to form groups. With their effort, three such groups have been formed in Biridi, Badsole and another village of Badjod GP. And all these four SHGs have federated themselves at the GP level in name of Pragati, Badjod, Their success encouraged similar people from other GPs of the block to form and federate SHGs. A larger federation of these SHGs have been clinched in Baripada block. Such federations conduct regular interface with the administration to demand their entitlements as a matter of right, not just as charity. They also have connected themselves with the state level network of differently-abled people.

They have immensely contributed to the lives of people in the village. They persuaded the family members of Sivani Behera, a speech and hearing impaired female child to send the child to school. Similarly, they negotiated with the local school teachers and got many such children admitted into schools. They helped many potential beneficiaries to take advantage of the ‘Single Window Provision’, known as ‘Windows of Hope; for differently-abled people started in the district for providing disability certificates, bus passes, I cards, aids and alliances, etc. The single window system was initiated by the then Collector Karitikeyan Pandian for which he received several at the state and national levels.
Satisfied with their efforts and performance, the villagers wrote to the BDO to provide Sampark the PDS dealership of the Panchayat.

The attitude of the administration
Despite strenuous efforts, all is not turning well, particularly the attitude of the administration and the society in general to them. Narrating the difficulties faced by such groups of people, Ranjit Mahapatra of Sadhana says “Though the Orissa government has provisions for formation of SHGs of differently-abled people under ‘Mission Kshamata’ in reality, they do not recognise the groups so formed. As result of which such SHGs are not getting any loans from banks for undertaking entrepreneurial activities.” While we are considering the differently-abled people as the criteria for defining ‘homogeneity’, they still apply the gender definition to it. In the case of this category of people, forming groups in line of gender is neither desirable nor feasible,” he adds. The PDS dealership application by Sampark SHG was rejected on ground of non-homogeneity as both male and female members are present in it. These people are also not provided work under NREGS in the area despite the provisions of the law to give them work according to their ability. Unfortunately, there disability is viewed first by the implementing authorities before their ability is judged.

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