Breakdown the Barriers and Screw Disability | Autobiography of a Weak Body but Powerful Mind
In primitive cultures like the Vikings, newborn babies with physical disability were left to die in the wild. Only in exceptional cases, were they killed by their own parents as a sign of love and affection. It may sound cruel and inhuman to some but to others it may look like mercy and kindness. And the “every coin has two sides” debate begins.
Me, I’m more of “we’ll see what comes next” kind of a person. Plans do not always go accordingly. Life if it were a plan would’ve been much more straightforward and dull. But it is not. It is a combination of twists and turns and full of surprises both good and bad. This is what makes it meaningful. And thus my life too, began with an inadvertent twist. My name is Asmi and I was born with a Limb Girdle Muscular Dystrophy (LGMD).
I know it’s kind of a mouthful but hey, I have it. I’m sure you can take a moment and “Google” it. It’s nothing fancy just plain old deteriorating muscles, weakening limbs, wheelchair and crutches and all the works. I try not to think about it. Matter of fact I hardly ever think about it. Although I was born with it, the symptoms started when I was 13 years old. And like all the new things in my life I was excited about it.
I know what you are thinking. You’re thinking I’m a crazy person. Or you must think I’m on some really weird medication (FYI, I do smoke pot). But no. that’s the kind of person I am. Of course there were those life shattering moments in my life. I cried for weeks, got depressed for months at a time. My teen years and disability decided to collaborate and make my parents’ life living hell. And what a glorious hell it was. Rebelliousness. Pain. Grief. Joy. Periods. If you can imagine it you would know exactly how horrible it ‘was’.
Related — Words from a Child of Deaf Parents (CODA)
Yes. It ‘was’. Among many other things that I was born with, intellect was one of it. My ‘disability’-havoc didn’t last very long. It was hardly 4 to 5 months that all the drama continued. Personally I blame it on the hormones. It’s like they all ganged up on me. But like every other problem in my life, this one was dealt with too. Slowly but surely, I became aware that I cannot do anything about it. Neither is there a cure for it nor is it wise to go out and find one. Yes researches are being conducted worldwide and I appreciate the efforts that are being put into it but come on people, mankind is very far from medical miracles like these. So back to my story…
TEENAGER with a DISABILITY in India
I want you to take a moment and think real hard on the above sentence. Each and every word signifies so much more information. In a country like India, where population is growing faster than all the trees that produce oxygen, being ‘physically challenged’ is not a cakewalk. To top that, if you are a teenage girl, shit just got real my friend. My life was pretty much what flashed in-front of your eyes just now. Middle class family. Teenage girl with a ‘disability’. Societal pressure on parents (and me). Inadequate medical care. Sympathy showers. And all the glory details that you can take out of any soap opera. But among all of this shit-storm I was an exception.
“That’s right, you heard me.
So what if I’m a girl?
So what if I’ve got a disability?
I could give a f*#k but I’m busy getting drunk and publishing papers.”
LGMD affects mostly a victim’s arms and legs. Sometimes it spreads to other parts of your body. In my case I had lost the ability to walk and my womb was fried. Barren as desert. But I still had my wits about me and for that I was really grateful. For me, my brain was the only thing I valued more than my life. As it is, I was ‘living the dream’; but thanks to some miracle my brain was left alone. Intellect was the only edge I had. And I say this not to cope up with my ‘disability’ but I was really smart. Straight ‘A’ student till graduation. Science trophies. Mathematics competitions and everything they had to offer. I nailed it. Also I won ALL of the ‘disability’ crap too. I was an inspiration to the community and bla…bla….blah. Intellect was my forte and I was proud of it. But what separated me most from other ‘challenged’ people was my attitude.
One might think that how can a person be so self-engrossed? Praising one so much? But I am one of those people. With great power comes great responsibilities. Or in my case great illness brings more wisdom. Look at people with cancer, and not just the patients but their families as well. They've accepted their fate. Death is inevitable and they’ve come to terms with it. Also there are some exceptional cases where some of these achieve greatness. So my question is why should ‘disabled’ people be any different?
The only difference between us and cancer patients is that we have to live with our illness. If a cancer patient had a choice between death and a life with a disability what do you think would he choose? There you have it. Now comes the part where YOU have to live with YOUR life. So what I look funny when I walk? So what if you need help to go from one place to other? Don’t be ashamed or embarrassed, be proud of it. Own your ‘disability’ is what I say to you.
Do we really need to go through this? I can start giving you examples of many great ‘disabled’ people and their achievements. But it’s not what I say, but what you perceive of it is what can change you. Me, I look upto those people. Sure many of us won’t be that great, but hey if you keep trying you’ll at least be somewhere near. Maybe you will achieve something maybe you will fail. But it’s the effort that matters. You won’t become a great scientist (Stephen Hawking) or a Mighty war chief (Ivar, the Boneless) or a great music composer (Beethoven) but at least you will be an inspiration for someone else. If not that then just live your life on your own terms.
So, coming back to me. I’m writing this with a beer in my hand. Yes I drink alcohol. I go to parties. I dance. I sing like an idiot. I’m just like any normal person. My disability never stopped me from doing anything that I can’t. Of course sometimes my over the top demands scare the shit out of people but hey you want it, you gotta go and get it. In a country like India ‘disability’ is only an option if you are rich. Middle class or poor people with ‘disability’ have very difficult time coping with ‘challenges’. Yes I too have been a victim of laughs and topic of discussion many a times but that never stopped me.
I have great friends. They never say no to me. And even if they do, I can always play the ‘disability’ card. It’s evil and mean I know, but it works every single time. This one time we all went to an amusement park, and I so badly wanted to sit in the roller coaster but the authorities wouldn't let me. They said it wasn't safe. So I started “crying” and blabbering how I will never be able to experience life the way normal people do and that I’m only a hindrance to others around me. That’s when my friends joined me in the act. They all just left me crying and went ahead to grab seats with a pat on my back. The authorities were aghast to see me abandoned like that and felt sorry. And so I got a ride in a train that goes over 120 kmph in the air. And I’ll tell you it was amazing!
DON’T MISS — My Serendipity | Written by a 15 yr Old Deaf Kid
There are many instances in my life where I was ridiculed and laughed at too, but that never stopped me. It happens to everyone. Why should I think too much about it? When I roll my way into pubs and bars with my friends, people give me the weirdest of looks. Most of the times my friends get scolded; it’s fun getting people into trouble. But once in a blue moon I too get lectured. Some congratulate on my breaking the barriers. Others want me to behave like what a ‘disabled’ person should be behaving like. I try not to hit them but it’s hard when sympathy turns to pity. ‘Disabled’ people don’t need your sympathy or even your pity for that matter. If you want to feel anything for us, try EMPATHY. Try walking in our shoes for once. And I don’t mean tying blindfolds for an hour to support blind people. Try dragging yourself in a wheelchair for a whole day and then tell me “it must be hard”.
Uuuughhhh. Just thinking about such things makes me mad. So I tend to avoid such thoughts and people. I focus on the things that actually matter. Like my studies, what to wear tomorrow, how to set my hair, etc.
I know all this must seem like ramblings of an irritated woman (or a drunken one). But what I want to tell is that YOU are the architect of your own life. Don’t let anything or anyone stop you from doing what you want. And like I said before, own your ‘disability’. Don’t hate God or anyone else for that matter. Be proud of it. I do that. When I introduce myself I go like, “Hey, I’m Asmi and this is my wheelchair.” The look on people’s faces when they hear that is priceless.
Life is waiting for you… I am waiting for you, where are you? Go out there and do something stupid. Make a discovery. Invent a gadget. Find a cure. Hell, just go out and celebrate your ability.
Note from the author:
Asmi is NOT a fictional character. Sure she doesn’t exist, but that doesn’t make her fictional. There could be an Asmi in your office in your neighborhood, hell, she could be rolling past you right this moment. I made up a character but that doesn’t make any of the things I wrote about, less real. These problems do exist in our society and so do such people. Is it really that hard to believe that a ‘physically challenged’ person could be like any other normal person you know. He/she could face the same problems (along with the additional ones) like you do. Why is the concept of chic ‘physically challenged’ individual so unimaginable?
To you I say, Breakdown the Barrier and Screw Disability, my friend. Let your mind run free!
Originally published at www.campustimespune.com on January 4, 2015.