Children of the Chinar Season 4: Driving towards change for people with disabilities
Hailing from Kashmir, Dildar Ahmad Shapo has become a renowned name in the social sector through his remarkable work towards advocating for the rights and needs of the people with spinal cord injuries. He has worked endlessly to bridge the gap between the scientific understanding of spinal injuries and the common knowledge of the society. Mr. Shapo has established his own rehabilitation centre by the name of CARE Foundation. In a very path-breaking turn of events, he had also embarked on a cross country drive by himself to raise awareness about the problems that face the people with spinal cord injury and also establish the fact that given the right conditions, the people with disabilities can also become active contributors to societal change.
Dildar Ahmad Shapo has been a vocal advocate for rehabilitation of the people with spinal cord injuries
Aayushi Sharma (AS): Tell me about your journey to becoming such an important activist for persons with spinal cord injuries. Would you also be comfortable in telling us how you got injured?
Dildar Ahmad Shapo (DAS): It all started with a small joke with my friends. While playing one of my friends pulled my hand and I couldn't resist him. As I was pulling back, I eventually fell to the ground. The moment I fell, I lost all the sensations in my legs all of a sudden. I could feel my legs through my hands. I knew my legs were there but I couldn't feel any muscle control. I screamed so loudly everyone came out to check what had happened. All those who were trying to help me, made me stand up at that time. This was a grave mistake. There was already a spinal shock in my spinal cord due to the impact of the fall but as I was made to stand up, the shock turned into a spinal injury and it aggravated the problem.
AS: Could you also tell us about the CARE Foundation, how it started and what you aim to achieve through this foundation?
DAS: This foundation is the brainchild of all of my partners but I was the one who had started with its idea. We first asked for some land from the administration to establish a rehabilitation centre. There is no place for the persons with disabilities to go for training to become an important part of the social fabric. In our hospitals here, there is not even a designated department for the persons with spinal cord injuries. We wanted to establish a multipurpose rehab home for people like us. When the administration asked me for the data of the people with spinal cord injuries, I told them that there is no registered data for them with the government. I had all the information about those people but it was not officially registered. So our next struggle was to get all this data registered with the authorities.
Since there were no ramps in these offices at that time, about four people used to lift me up through my wheelchair and get me up the stairs. These conditions continue to be present in the buildings over here. During the years of conflict in Kashmir, even our wheelchairs were searched by the authorities.
After all these struggles of even getting our names registered, we finally overcame the bureaucratic barriers and decided to name the foundation as CARE which stands for Concerned About Rehabilitation and Empowerment. We seek to not just rehabilitate the people with spinal cord injuries but also empower them to live through the challenges of everyday life. We were just six people at the beginning but eventually became a strong team of dedicated people.
AS: Apart from establishing the CARE foundation, one other very extraordinary thing you have done is the cross-country drive all by yourself. Tell us about that drive and how you came to decide that you want to do this.
DAS: It was during the early days when the internet had barely reached Kashmir, but I had found an advertisement for a disabled friendly scooter in a magazine. I called them up to inquire about it and eventually purchased a scooter designed specifically for the disabled friendly people. However our society had such a hostile attitude towards this that I was driven to eventually sell the scooter.
One day I got a call from the same people who sold me the scooter informing me about the new patent for a modified disabled friendly car from a Korean company. I eventually got the car and it was the first time that I drove a car after my injury. It was also the time when I decided to use this car drive to create an awareness about the needs of the people with spinal cord injury. I embarked on this journey without informing anyone at home because I knew there would be resistance. Many people started questioning my abilities but I still did it. Then I used this medium to drive across the country in an attempt to let people know about the capabilities of the people with spinal cord injuries and other disabilities.
AS: I also want to know what according to you are the needs of the people with spinal cord injuries, you had talked about the infrastructural issues and inadequate record of data with the administration, what else is needed?
DAS: There are three things that are needed. One is awareness, whenever any such accident happens, the people are taken to the hospital and expected to be just bedridden. They are expected to lead a passive life who are just given some food and water after intervals. The families also need to become aware. The second important thing is the physical barrier, people like us need to be carried to places and end up becoming burdens on others. Whenever we make a building we don't even think about the elderly who can't walk long, forget disabled people. All the facilities that would help us would help others like the elderly or people with other disabilities as well, it is not just for us. The last important thing is to let go of the social stigma. The social stigma contributes to all the other problems that exist for us. It creates a hindrance in the way of social acceptance.
Another need is also to build more of these rehabilitation homes which involves a team of professionals that would teach the people with spinal cord injuries how to master doing daily tasks to become self-sufficient in the long run. This is what we aim to do with CARE foundation as well and want to advocate for the establishment of more such organisations.
AS: Thank you for sharing your story and your vision with us. Would you want to say something to the readers who are reading your story?
DAS: I want to also target the misconception that is associated with the people with spinal cord injuries. People just assume that the people with spinal injuries just can't walk. This is just a part of the problem. This brings with it other sets of problems as well. There are no sensations in the body below the injured spine and no control over the organs in the part of the body as well. This is why the UN has recognized this as a major disability. There are disabilities within this disability. So spinal injuries do not just mean that one cannot walk.
AS: With this we have come to the end of this interview. Thank you very much for giving me your time and sharing your story.
DAS: Thank you.