Published on: June 8, 2017
Sudip is a bright, friendly 22 year-old man. He is sharply intelligent, and thrives off human interaction. Sudip lives with his mother, brother and sister in the Kathmandu Valley and has just completed the first year of a 4-year Bachelor of Information Management.
Information Management, however, is not the course that Sudip would ideally like to be studying. His dream is to study Science. Sudip has Cerebral Palsy, and due to lack accessibility in the University’s science lab, a science degree is just not possible for Sudip. Even in his Bachelor of Information Management degree Sudip faces immense obstacles each day- many of Sudip’s subjects take place on the 4th floor of the University, and to attend these classes Sudip must remove himself from his wheelchair and climb 4 sets of stairs with his hands. This is Sudip’s “normal”.
Cerebral Palsy affects Sudip’s ability to control his muscles, his limbs are stiff and often forced into painful, awkward positions. His muscles tremble and writhe with everything he does giving him little ability to control them, making speech strained and walking impossible.
At home Sudip is cared for by his mother. He requires full time care due to the severity of his disability. Sudip tells us that his mother is under extreme stress since the death of his father 6 months ago. She is now the only breadwinner for the family of four, a single mother and a full time personal carer for Sudip.
Sudip was recently invited to participate in the 10 day Independent Living Program (ILP) at the Independent Living Centre for Persons with Disabilities- Kathmandu (CIL-Kathmandu), a program that allows persons with disabilities to experience having a professional personal attendant for the first time, as well as providing them with practical living skills and educating them on their individual human rights.
“In the Independent Living Program I learnt how to make my own decisions, this is the most important part of life”, says Sudip.
Taking part in the Independent Living Program was bitter sweet for Sudip. While it was very positive to experience what it was like to have a personal attendant, he knows that because of his family’s financial situation there is no opportunity for him to have a personal attendant at home. He feels strongly for his mother, and the immense strain it is for her to care for him and provide for the family. “My mother cries a lot of the time, since my father died life is very hard for her” he says.
Currently the only government support that Sudip receives is 2000 npr ($19USD) a month, his mother’s income barely covers the cost of rent for their family home so there is nothing spare to fund the assistive devices and services that Sudip requires for his disability.
Sudip’s story is one of hope. Hope that the current situation in Nepal will change within his life time, and he will be able to live his life to its fullest potential, independently. If Sudip were given better accessibility options at University he could be studying the degree of his choice, if he were given a personal attendant his mother would be able to work without guilt that her son is left unattended and at risk of accident or injury, if Sudip were given the right to the assistive devices he needs he would be able to function much more independently, and if he were given financial support from the government his family would be able to pay their rent and live a less stressful and more comfortable life.