“The world worries about disability more than the disabled person” -Warwick Davis
I remember this memory, of childhood, when I was 7 or 8, the time video cassettes were in market, when my dad got a ‘very inspirational Christian movie’ cassette. We decided on a date to watch it, we probably called our relatives too. It was a movie called Joni. It was a story about Ms. Joni Erickson, who after diving incident, was paralysed neck down for the rest of her life. The movie for me, somewhat changed many things. After that day, I always have thought about and pictured the horrifying life after a disabling incident. Then you know, I grew up, but still am perplexed of how do they live their lives? More I see them, the more amazed i get, seeing the life that they lead, the normalcy that prevails. Everything for them is so normal; they don’t have any worries, any regrets, any pain. I have constantly been overwhelmed by the entire phenomenon of being disabled. That by the way is the life in videos, TV and in the third person. But, is it actually so easy? Can that happening to you, be justified? Doesn’t the breaking point really come?
I have an uncle, who is now around 35 years old. He was brilliant as a student, son and as an employee in an awesome company. One day, he was returning home from work and standing for the bus, and that’s when the lights around him started going dim mid (very sunny) day. And that, is the story of how he got BLIND. Within 24 hours, he couldn’t see anything except shadows (including of him in the mirror, which is horrifying!). While he was telling me this, I couldn’t really believe my ears (amidst some gruesome goosebumps) that life could come down that hard on you. How is this possible?
I have wondered all my life, what will be my state if something like that happens to me! Will I be able to cope up? Will I be able to grasp the fact that I cannot see the things that mattered to me, and the things that I aspired to see, anymore? Will I be able to accept the fact that I will need aid, from others all my life? Will I be able to accept the irritating sympathy and the helplessness that all people around me will express, all my life?
These questions have literally haunted me. I used to take bath with my eyes closed just to feel what my uncle used to feel. It was spine-chilling. Wanting to nose around, I saw so many videos on YouTube, about paraplegics, quadriplegics, amputees etc. More than educating me on the entire thing, these videos helped open my eyes to something, that is just a haunting, nothing more than a scary dream….
But then, I realized, that all people after going through something as ghastly as a spinal cord injury, realize that they have been given a bigger gift, the gift of being alive, because they have been to the end point; they have seen death face to face. But personally, there is one question. Is the fact of being alive, bigger than the whole of the difficult life you have in front of you? Is surviving the accident, better than this fate worse than death? Yes, there is physiotherapy, there are support groups, there is an entire country of people, who is supporting you, who will empathize with you, but do you really empathize on yourself? Is there a day in a disabled person’s life, in which they wish they were never born..?
There is no ‘greater meaning in life’ after being disabled, as some people say. It’s just to make you feel better, and is to make you do something in life which you can, because all the things that you did before, now you just can’t.
There is a breaking point. To every amputation, to every paralysis, to every eye gone blind, there is a limit of being sad. People just don’t think about being better dead, because they are busy trying to make a new life out of whatever’s left. And yes, some people come out very successful in whatever they do, overcoming their weaknesses. But to every disabled winner, the thought of ‘doing better outside a wheelchair’ comes. And there is no going back after that.
I personally wouldn’t be able to accept disability. I have, whatever they call it, ‘Dysmorphophobia”, with a lotta questions in mind of course. Questions like, will I ever pursue music again? Will I ever pursue civil engineering again? How will I go to a construction site on a wheelchair? Will I ever be able to drive again (keeping in mind the Indian facilities, where there is nothing except the three wheeled cycle transport which polio stricken beggars use to carry themselves)? Will I ever fall in love?
Yes, i can retrain my life. Yes i will be an inspiration. Yes, i will be a world renowned speaker. But is it worth it?
Famous disabled people say that they thank God that they are disabled, otherwise they would not have reached where they are right now. But, is it worth the dependant life you’re living?
Bringing a smile on others’ faces is priceless, but is it worth the no-wheelchair-life of simplicity, and normalcy that has gone away, forever?
Now let’s see an Indian POV/scenario. Being an Indian, I consider the disability accessibility to the public facilities in India, namely toilets, buses, roads etc really pathetic. For example: The Indian Railways. (Inspired from a blog by Shivani Gupta, founder of Access-Ability) Railways, being the pride of this country, are worth giving a thought. Are our coaches accessible to the disabled? Neither are there any ramps available for the coaches nor are the compartments equipped with wheel chair accessible toilets. The two-minute stop time of a train in a minor station is so not enough for a disabled person to be carried down safely and the passageways in trains are also too narrow for a wheelchair. What is the government thinking?
Okay, now that were the Indian facilities which are despicable. But then there is more. What about job opportunities? Is the disabled community getting any benefits of the Disability Discrimination Act 2005? Soaring a mile high in the economic sphere, the mindset of Indians has remained the same. A recent incident that drew attention to the insensitivity towards people with disabilities was the case of Jeeja Ghosh, suffering from cerebral palsy, who was not allowed to board a SpiceJet flight. Another recent case of a couple in Mumbai wanting to abort their unborn baby, just because the fetus in the womb was diagnosed with some disabilty, was so enraging and plaintive.
And yes, there is one more thing. Indians all around the world are known for staring. (This aspect goes beyond disability here. :P). I do too. Period.
About the medical and psychological aspect of it, are there even therapy centres in India? Are they good enough? In a country where there is no free government support or medicines, disability is often a financial drain on family resources. This is especially true if the disabled person looses their job / business and becomes reliant on others on financial matters.
We are born in a country that doesn’t care.
I know I am putting in a very pessimistic viewpoint, and painting a very morbid picture. I know I am wrong with this. But, yes, it’s what I think, and just my fears all put down together, as my first ever, official blog post. Akanksha, thanks for reading this through.
Please don’t forget to comment with whatever your view on this is.
Cheers. (Just water or perhaps redbull..!)