The time to bring about a positive change in the world around us has been long due .. may be for centuries now. It is tough for a person to choose a particular or specific change when you see the world around you. Violence, terrorism, crimes, litter in streets, the paan stains, domestic violence, child abuse, education system, bribery, communal divisions, stinking politics, discrimination in name of gender, caste, status… Whew! I cannot stop to take a breath as the list of things keep hitting my thoughts.
I have to calm down, take a deep breath and concentrate on one thing that hurts me the most and the situation I would like to change as much as possible. Also I want it to be a problem that I can do something about. No use howling at the moon... which is beyond my reach (?). Deep breathing works, the picture becomes clear and I can see now what I would love to change in the world around me. It is the Indian attitude towards differently enabled people or just people who are generally different from us.
Many of us must have experienced the looks, chatters and rumors that go around when you are even slightly different from the mob around us. Be it the dressing style, color of skin, pock marks on face, hair styles, pimples or even slight limp, it is good enough to attract the attention of Indian people. You don’t have to perform Herculean tasks in India to get the attention of the mob. In my childhood, riding the bicycle got me enough attention, that is was good enough for my parents to stop me from enjoying a fun ride in the evening.
Not many hesitate to stare and embarrass people in India. NO! They do not feel it is indecent to stare at someone. Some will even go ahead and ask questions as to what is wrong with the person. Recently I was shocked when an elderly man asked a young girl in the bus, whether she had tried fair and lovely? I thought he must be her grandpa or something; imagine my shock when he got down in the next stop giving her a wicked smile. I have no clue why the girl put up with such nonsense silently like a TV put on mute.
The portrayal of intellectually challenged people in our Bollywood cinema is disgusting. What is comedy about being IC? Is that something to laugh about? I don’t know how far our society is affected by our cinema but sure there are residues left behind by such portrayals. When they steal action scenes, music, and stories from Hollywood, why can’t they learn from them to create differently enabled characters in our Bollywood movies?
There is no line of privacy drawn when it comes to Indians. We want to talk about schools, grades, dress codes, marriage, divorce, and everything that would be considered personal in other nations. Imagine the situation of differently gifted or special needs people in this scenario.
I have had personal experience with myself where I dealt with my club foot and limp in my childhood, and then with developmental hindrances faced by my daughter and dyslexia of my son (something I avoid discussing because I don’t want him to be branded now; since, he has been able to escape a name tag so far and he can do it for his own good in future).
In my childhood, I had to face a lot of teasing and jeering from other children and also by elders. Why go far, my grandma would say at times when I was being naughty, “God did not make you limp for no reason, if you had straight feet you would be out of everyone’s reach”. When I think back about it, I feel so angry because that was such a wrong thing to say to a child who is yet to understand such remarks. Often I did very well in my studies and sadly instead of being appreciated, I would be accused of being sympathized and shown partiality by teachers. It was easy handling me even when I was young, because God had given me strong personality to face people and throw their tantrums off my tough hide. Nothing deterred or penetrated deep inside me. I cannot say the same when I had to deal with the problems faced by my child. All my raw nerves were exposed for the world to hurt me and they did with a vengeance for failing earlier. Initially, I hid behind steely masks not giving them the pleasure of success; but then slowly I myself turned into steel and became stronger to face them and give better life for my child.
I do my bit everyday to bring the change in the attitude of the people towards special needs people in general and girls in particular. I wish that more and more people would join the cause to spread awareness and bring about a change. Many countries have seen the change and I have myself witnessed it in USA.
Farheena was a happy go lucky girl in USA. She wore a smile and confident look most of the time when she went out there, which sadly disappeared once she came back to India. People who see her pictures from USA at times have trouble recognising her to be the same shy, withdrawn girl they see her to be now. The big difference has happened just by the way people respond and react to her.
I feel sad that she could walk around happily in the Wal-Mart, Publix and other malls without caring as to who is looking at her, which she cannot do now. In USA she so often welcomed strangers with a ‘hi’ and they readily waved back a big ‘HI’ to her, which at times was leading to quite some communication with Paula, my friend as a mediator. No one treated her as a special needs girl there; she was just a special girl enjoying all the love and attention she deserved from people. There were some special people like Tysha, who went out of her way to show how much she appreciated and loved Farheena, though we met as strangers.
Back in India, most of the time Farheena is pushed into silence by people asking what she is saying over and over again, or discussing what is wrong with her without even realizing they are hurting her emotionally. They ask questions just because they have to satisfy their curiosity. They need not bother, as they very well know that they cannot help her in anyway. At least they could allow her to be herself without having to make her a topic of the chat.
Words heal and words hurt. Use your words wisely and mind what you say to people around you. Everyone has a heart that hurts.
At times I have to be rude to stop people from being silly and acting silly towards Farheena. I had prepared a list earlier, which if people read to improve their behavior would make the life of differently enabled people a lot better. When you check this out, you will realize how unnecessarily we are adding to the burden of the special needs people which can be avoided so easily.
Please bring about a positive change in the world around us so that everyone gets to live happily and securely here. If you actually do not want to do something that is fine, but please take care to avoid doing certain things which would be a great help in itself.
· Build a flight of stairs up to your front door. My daughter goes through so much of extra effort everyday to enter our home. Many grand buildings in India have been built without keeping the people in wheelchairs in mind.
· Tell a special needs person that they are better off dead or ask stupid questions like ‘Why did God do this to you?’ If God has done this then, he should be having the answer. It is said that people meet God after death. Please try that route. The special needs people may not highly benefit the society but then they mean no harm to anyone either. Why aren’t those questions posed to the harmful people in our society? No one asks that to the rapists, murderers, crooks etc! Amazing is the mind of the people around us. Sigh!
· Remind special needs child about their special schools and mention about how unfortunate the children going to those schools are.
· Make the mother the sole responsible caretaker of the child.
· Avoid talking directly to the challenged child, but talk about them to someone nearby assuming they have no ears, eyes, intelligence and heart to hurt.
· Always ask what is wrong with the child and how, when, where did it happen blah blah blah… Why do you need to know all the details? Can you help in anyway?
· Tell the parents or special people themselves that they have to find a solution to their condition no matter how much money it will cost. Do they actually need to hear this from others?
· Introduce a challenged person to someone as the one suffering from such and such condition and portray them as victims of curse. We often hear the “Ayyo Karma .. Karma” mutterings from so called know all smart ones.
· At times people ask about Farheena as though they have heard about her condition already and she realizes that people discuss her. No. She is not happy about this. Don’t make the special needs people conscious of their condition and make them feel that they are gossiped about by people.
· You need not patronize them either. Treat them as normal people because they are normal. Find the definition of abnormal in a good dictionary and know what it is.
- · One smart quote says that “Only two things are infinite, the universe and human stupidity, and I’m not sure about the former”. I am sure about the truth in that quote after listening to people who have complained that special needs people take so much from the society and relatives giving back nothing in return. Once a lady told me not feed Farheena much, because if she got heavy it would be tough for me to handle her. It was a time when I used to carry her around. I am so glad Farheena is my daughter and not hers.· What is the need to proudly flash your knowledge in front of the special needs people about their conditions? Many people confuse mental illness, mental retardation, and other such ailments but never try to keep quite on the issues. They want to talk about every person they know with a certain ailment, every doctor they have heard about or every book they have read on that particular topic. Why not try your GK with Amitabh Bacchan on KBC?· Complain that people with challenging behavior are just naughty or blame the parents for not teaching proper behavior to their children. It is not easy to be a parent to ADHD children. I may not have personal experience, but have closely watched the struggle of the mothers with hyper active children.· There is no need for every person under the sun to know personal details about anyone and that includes differently enabled people. Don’t ask extremely personal questions relating to menstruation, hygiene etc.· When they achieve something it is through hard work and not by luck. Avoid saying you were lucky to achieve that.· Show exaggerated sympathies along with the typical tongue clicking and feel great about yourself… It is not helping anyone people. Keep those sympathies for yourself. Special needs people need empathy and not sympathy.· Resist asking stupid questions like “Does she eat?” God! How do you think she is surviving?· Special needs people have emotions and feelings, may be stronger than what we realize. My daughter doesn’t talk fluently, but that doesn’t mean she cannot think. At times she has come out with amazing comments about people who ask silly questions in front of her.· Argue in front of the concerned child whether the money being spent on treating them is really worth or not.· Mention that they don’t have to struggle with studies and homework, how lucky they are. Think over it in silence once again.· Complain how easy life is when your Mom is doing everything for you.· Bring in God into the issue and remind the people that may be they are being punished for their past sins. No one has spoken to God and heard that personally from him. We are not great enough to make assumptions on his behalf.· Give them stares and make them feel uncomfortable. This is the worst thing we face in India.· Insist on assisting a person even when they flatly refuse to be helped. Respect their choices and decisions.· Touch them without their permission. Not many like to be patted on the head or touched on cheek.· Lean on their wheel chair when you talk with someone else.· FINALLY, TAKE ADVANTAGE OF THEIR INNOCENCE. It is terribly wrong to take advantage of a special needs person in anyway
Many people say that I am earning favor of God and good Karma by taking care of my daughter. I don’t want to hear about the good karma. To hell with your heaven, people. I don’t give a damn about that. All that matters to me is my daughter and I love her.
My friend Madonna says, “I firmly believe that those spirits who choose to come to this earth with a disability are the strongest, most advanced spirits of all. They are teachers, here to show the rest of us the real meaning of love and compassion. Every time I see one of them, I am humbled by their selflessness and their ability to love others in spite of the obstacles they face in this world. They are not to be pitied or treated with contempt, impatience or irritation. They are here for a purpose...to teach us to love unconditionally”. She is absolutely right there.
Many years ago, I had read an article in newspaper and typed it out to read once in a while when I needed to change myself.
A few years ago at the Seattle Special Olympics, nine contestants, all with special needs assembled at the starting line for the 100-metres dash. At the gun, they all started out, not exactly in a dash, but with a relish to run the race to the finish and win. After running a little distance a boy stumbled on the asphalt, fell down and began to cry. The other eight heard the boy cry. They slowed down and looked back. They all turned around and went back. Every one of them!
One girl with Down’s syndrome bent down and kissed him and said, “This will make it better.” All nine linked arms and walked across the finish line together.
Everyone in the stadium stood, and the cheering went on for several minutes. People who were there are still telling the story. Why? Because deep down we know this one thing: What matters in this life is more than winning or living for ourselves. What truly matters in this life is helping others win, even if it means slowing down and changing our course.
We need to learn and change the world to make it a better place for everyone.