I met with two young people with disabilities [both SCI] a couple of days back living in the Rural areas of Andhra Pradesh. When I met them I could see how lucky I am not to be born in such a remote area and to poor family.
This young man became disabled when he was 19. He is now 29. All he does all day is to sit outside his house and just see people passing by. That is what he likes to do the best and this is also his main activity. I asked him what his future plans were. He just said “what future plans can I have when I cannot do anything.” He is a paraplegic and his hands function well. He is independent in his ADL. He’s not educated much just passed sixth class. Before his accident he wanted to be a driver. But now there are no opportunities for him either to improve his skills to do any kind of work. So he just sits there in entire day doing nothing. I asked him if he thought about getting married. He was sure you never want to get married. It was obvious he had no idea about his sexuality..
The other was a lady about 30 years old. She became disabled and she was 12. She will able to walk a bit then. The never went to a doctor when she had an accident. Over time her condition deteriorated because of unstable spine and now she is a tetraplegic. How mother is a daily worker. The mother has to go out every day to earn a living otherwise they would have no food on the plate. So after helping her daughter in her toileting activities in the morning, which she carries her to the fields, and feeding her breakfast she leaves. The mother lives at around eight in the morning and return that about four. During the day this lady does not eat a drink anything. She just sits outside the house seeing people walking by. I asked her if there was a scheme for the government to provide a personal assistant then would she like to go out? Sounding unsure she said “yes why not I’d like to go out”. Where would you like to go? I asked. “To the bus stop” she said. I asked if she’d like to go to the temple or to the market or some other place. “No I just like to go to the bus stop”. Why would you not like to go further? I asked. “Just going to the bus stop would be enough for me I don’t want to trouble anyone any more than that” she said.
Apart from these two I met two of the men with spinal cord injuries. None of them really knew how to manage and to live with SCI. Neither do they have money to go to doctors and get the spine stabilised or to do something about the pain they get that prevents them for sitting longer than half an hour
Such a lack of opportunities and aspirations. Such hopelessness. It is unfair that these people have lives with nothing to look forward to. I don’t know what I, we or the government can do. I’m sure there is lots that can be done to improve the situation but not sure what.
I just wanted to share with all of you what I saw. Would be great to have some discussion and ideas.