Living with Spinal Muscular Atrophy in India – Guest Blogger


Today we have a guest post by Pratyush Nalam. Pratyush lives in India, where attitudes toward integrating people with disabilities into society are much different than they are in Canada and the United States. Thank you, Pratyush, for sharing your story with us,

Being differently abled – An Indian Point of View

Hello everyone!! I am Pratyush Nalam, an 18-year old guy living in Mumbai, India. I have just finished high school and entered college for my undergrad. It is wonderful of Sarah to allow me to share my story on this blog.

I suffer from a disability called Spinal Muscular Atrophy (SMA) which is a neuro-muscular and genetic disorder. It essentially means that I cannot walk due to the general weakness of my muscles. I also cannot lift any weight heavier than a one litre bottle. I am confined to a wheelchair and cannot move on my own. This disorder has no cure so I will never be able to walk.

Nonetheless, this hasn’t stopped me from doing anything and I always live life to the fullest.
My parents have been a pillar of support for me and have ensured that I don’t miss out on anything in spite of my disability. They have fought for me to get admission into normal schools. You might find this surprising being in the West, but it is a different story here in India and other developing countries. Schools are reluctant to give admission to students like me because an additional responsibility is placed on their head. This is in contrary to Europe and America where schools are positive about admitting any type of students and go to great lengths to ensure the child is taken care of even if he has special needs. Nevertheless, I must add that I am grateful to the schools I have studied in. They have taken good care of me and I am really indebted to them.

Challenges in Society

Living with a disability here in India (or any developing country for that matter) presents its own set of challenges. The first and foremost is accessibility. This has been the single biggest problem for me right throughout my life. You have steps everywhere but ramps will be present only in a few places. It is a great headache every time I go out. I have to think twice before going out whether it is for a movie, for shopping or just to have dinner at a restaurant. This is the reason I have always used a manual wheelchair instead of a motorised one. Life is much simpler because manual ones are lighter and it is easier for people to life when there are steps.

Another major issue is the attitude of the people themselves. People look at you in a different light whenever they see you in a wheelchair. They show unnecessary sympathy but no empathy. Moreover, you get all sorts of stares when you go out. You get the why-is-this-guy-in-a-wheelchair look as if it is a sin to be in a wheelchair and not be able to walk. There are even people who think that there is something mentally wrong with me. I have had persons asking my parents if I can hear and talk! I mean what nonsense is this! It is a Herculean task to make people understand that I only have a physical disability and my mental facilities are in perfect, working condition.

The Importance of Attitude

These challenges are faced on a day-to-day basis not just by me but anyone who faces a physical disability. Awareness among the common man is extremely low in such issues. Anyway, now I have entered college. I study at the Indian Institute of Technology, Bombay in the field of Computer Science Engineering. The field of technology has been my passion since childhood and hence, I have chosen the aforementioned branch. The institute has been very kind to me and they have been provided me with a motorised wheelchair to travel within the campus as distances on campus are very large. Ramps are present at most places and they have promised to build the remaining ones so that I don’t face any difficulty.

Living with a disability has not stopped me from living life just like anyone else but with some modifications. Life has been generally good and I am grateful to God for whatever I have. I also thank Sarah for allowing me to contribute to her blog. I also blog at  http://reflectionspn.wordpress.com/. It is a more general blog and I blog on all topics. You are free to contribute to my blog too. You can contact me at reflectionspn@gmail.com  or follow me on twitter at http://twitter.com/pratnala.