Why We Don’t Deserve To Live – My Take by Swarnalatha J , founder of Swarga Foundation

In My Take this week, Swarnalatha J, founder of the Swarga Foundation, which works towards promoting awareness about neuro muscular disorders, makes a passionate, moving case for inclusion.

Shyam Sundar, who is 14 years old, and is affected with Muscular Dystrophy is one of the brightest boys in his class. He’s 5.5 feet tall and weighs about 50 kilos. It’s difficult for people to lift him. There are no ramps to classrooms and no accessible toilets in his school. He stopped attending classes and studies from home. He visits school when it’s absolutely necessary. He misses his friends and all the mischief. He lost his father in a road accident six years ago. His mother is struggling to make the ends meet. Our repeated requests to the school authorities to build ramps to his classroom is unheard.

Srihari,30, was forced to quit his well-paying job in a reputed multinational company after he was diagnosed with Multiple Sclerosis. Our efforts to retain him in the job went in vain. It was a long fight of two years between his employer and us. Hari gave up the fight as it was too stressful and affecting his health considerably. His wife left him too. He is unemployed now. His confidence and self-worth have taken a severe-beating.

28-year-old Priya is affected with polio. She is working in a college and is financially independent.She is looking for her soulmate, but is yet to find one. Her parents are worried whether anyone will come forward to marry her. Too many unanswered questions about her future.

Jennitha, 28, also has polio and is a five-time world champion in chess and a Woman International Master. Despite her achievements, there is no support from the government. People hardly know her.

If the Government and the society cannot provide solutions to these problems, it’s best we make euthanasia, or mercy killing, legal. All of us pay taxes like anybody else. There is tax even on disability aids, which is equivalent to seeing, walking and hearing. No insurance company covers our medical expenses.

“I have known of many friends who became disabled overnight owing to road accidents. Some of them are amputees, some quadriplegic, (paralyzed below neck), some paraplegic (paralyzed below waist). Some of them became disabled due to to severe neurological disorders.

What is common among all of them is the initial phase of depression. 90% of the affected and their families are never able to come out of this phase. They are forced to isolate themselves from rest of the world.

10% of them do make it to the second phase, where it’s all about seeking sympathy. It feels good to be the centre of everyone’s conversation.

Barely 0.5% make it to the next phase of being proactive, which is to accept things the way they are and move on. Soon we realise that there is no way we can move on.

All We Need is Inclusion

All we need is the desire to include us in society. Next time, any building is built, build ramps, make your washroom doors a little wider just like your hearts so that wheelchairs can go in. You wouldn’t know how many hearts you would have touched. Employ us. Disabled people are genuine, honest, hardworking and can prove to be greatest assets, as they are committed. Provide us access to education.

If you cannot do this, it’s simple – KILL US.

Watch in Sign Language