‘My Daughter Is A Young Lady With Special Needs. During Our US Trip She Opened Up, But Is Pushed Into Silence In India’

Apologies to patriotic people, but most of us Indians are not sensitive to special needs people & their emotions. Let’s make this world a better place for them!

My daughter Farheena is a young, smart lady with special needs. She is 26 years of age. I was diagnosed with 3rd Stage breast cancer when she was just 11 months old. Considering how our society responds to people who are different in any way, I was so scared to die that I kicked cancer and continued living. Of course, I had to undergo regular treatment to overcome cancer, but it was not tough.

What has been tough is fighting for the dignity my daughter deserves; especially in my immediate surroundings. Sorry patriotic people, my apologies to you in advance, but most of us Indians are not sensitive to special needs people and their emotions. At times I have come across angels as well, but most of them have behaved as though they carry the devil on both shoulders.

In the US, my daughter was not treated as a special needs girl, just a lovable special girl!

I visited the USA with my children in 2008. When I was going through some pictures of our USA trip, to my utter shock I found a lot of difference in the expressions of Farheena when she was in the USA and now when she is in India.

I pushed the thought aside thinking it was all in my imagination. Without mentioning anything about what I felt, I showed her pictures to a few of our friends and they said the same thing. They say she was a different girl in those pictures.

I feel sad about the fact that she walked around happily in Wal-Mart, Publix and other malls without caring as to who is looking at her. Often, she welcomed strangers with a ‘hi’ and they readily waved back a big ‘hi’ to her.

At times this was leading to quite some communication with Paula, my friend as a mediator for Farheena. No one treated her as a special needs girl there; she was just a special girl enjoying all the love and attention.

Children continue to be excluded for having special needs

Back in India, most of the time Farheena is pushed into silence by people asking what she is saying over and over again. This was because they cannot understand her, or discuss what is wrong with her without even realizing they are hurting her emotionally.

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They ask questions just because they have to satisfy their curiosity. They need not bother, as they know very well that they cannot help her in any way. At least they could allow her to be herself – a beautiful happy young lady.

Though I stand proudly with my daughter, it hurts when people are insensitive. The life of the differently abled people would be much better if people read this list and improved their behaviour.

A request from the heart of a mother!

This request comes directly from the heart of a mother with a special needs child. This is not an imaginary list but it is what I have come across in the past 25 years. Believe me, it is much worse than what I have put out here.

First and foremost:

•  Avoid building a flight of stairs up to your front door. My daughter goes through so much extra effort to enter a few places we have been invited to. If you do, please have banisters for support. 
• Tell a lesser gifted 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 hurts them when you say it. 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?
• Remind special needs children about their special schools and mention how unfortunate the children going to those schools are.
•  Avoid talking directly to the challenged children, but talk about them to someone nearby.
• Always ask what is wrong with the child and how did it happen blah blah blah… Why do you need to know about the details? Can you help in any way?
• 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 conditions and portray them as victims of curse. 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.
•  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 society and relatives giving back nothing in return. Once a lady told me not to 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.
• 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 quiet on the issues.
• Complain that children with challenging behaviour are just naughty or blame the parents for not teaching proper behaviour to their children. It is not easy to be a parent to children who have more energy to spend in a day that we may spend in a month. I may not have personal experience, but have closely watched the struggle of the mothers with hyperactive children.
• There is no need for every person under the sun to know personal details about anyone and that includes differently abled people. Do not ask about their periods, bowel movements, marriage or health issues. 
•  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. If you have sympathy for someone, do something for them, do not express it. 
• Ask stupid questions like “Does she eat?” God! How do you think she is surviving?
• They have emotions and feelings, maybe stronger than what we realize. My daughter doesn’t talk, 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. Some parents do not understand how tough it is for the child to listen to this conversation. 
• Exclaim 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. My daughter would definitely like to be independent. 
• Don’t bring God into the issue and remind the people that maybe they are being punished for their past sins.
•  I don’t want to hear about the good karma I am earning by taking care of my daughter. To hell with your heaven.  I don’t give a damn about that. All that matters to me is my daughter.

Finally, please don’t take advantage of their innocence

Words have the ability to heal and hurt. Use your words wisely. Just because you can talk, you need not use that ability to create pain and sorrow.

Image source: Still from Shakuntala Devi

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