Wednesday, March 15, 2017

Aditi Verma – Entrepreneur With Down Syndrome

The greatest happiness that any teacher feels is when her students achieves success in life. When the student is special with downs syndrome, the happiness is ten fold.

Normally the first reaction that the parents get when they get a special child  with down syndrome is  one of shock and confusion. They feel their world has fallen apart, they are frightened for the future. But after few years, they begin to understand their child and learn that children with down syndrome are really very talented. If trained under special care, they are as capable of leading a normal life as any other normal person, only a little bit slower and may need supervision.

Aditi Verma beat disability and became entrepreneur when her parents gifted her with eatery on new year’s day last year.

On my recent visit to school at CBD, Belapur, I decided to spend one afternoon at Bhoomi Mall at CBD after school hours. Bhoomi mall is still new, with many shops waiting to find its owner, but three floors upstairs is a small eatery called ‘Aditi’s Corner’ that sells chocolates, drinks and snacks and is run by Aditi Verma who has Down Syndrome.

What will you have?” She asks as soon as we settle on the chair outside the eatery. I want to give her business so I ask her what on menu. The dish of the day is ‘Vegetarian Briyani’

Everyday is different lunch” she explains. The food is cooked at home and the servings are just heated in microwave at the stall. There are many offices in this mall that patronise her café.

I glance into her eatery and see chocolates, wafers, biscuits, Maggi packets, soft drinks along with sandwiches. There is a small fridge in one corner, a coffee and tea making machine on the other side. I am not really hungry and cannot decide what to order.

Will you have corn pattice?” she offers. I order for one dish that I share with my friend. The frozen corn pattice are removed from fridge and heated on hot grill and served with tomato sauce and mint chutney. It tastes good. She has two staff members, Sardar Paramjit who takes care of cooking at the café and Ram, the delivery boy, who carries the deliveries to the offices in the mall.

She sits down with us for a friendly chat and I am impressed. During her days at our school at Swami Brahmamand Prathisthan, Maths was her favorite subject, and she had won the ‘Best Student Award’ in 2010 for her overall performance. Besides academics, Aditi loved dancing and dramatics and in an inter-school competition in 2012, won the ‘Best Actress Award’

Phone rings and she takes pen and jots down the order. Some one in the mall wants sandwiches and coffee. She repeats the order to her delivery boy and then turns her attention back to us and talks about herself. At 6pm she will go home.

Will you go home alone? I ask

Yes, I will take autorickshaw” she says

She is quite independent and confident. Aditi Verma has taken her initiative further. She represented Maharastra as an entrepreneur in the Self Advocate Forum of India (SAFI) at Bangaluru on December 9, 2016

I even gave a lecture on my initiative and my desire to expand it.” she has been nominated as the State representative for SAFI

Later, we go one floor down the mall to meet her father who owns an office in the same building. He is one proud father who speak fondly of her achievements.

Hope is re-kindled for other special children too.

Saturday, April 9, 2016

Autism Awareness Month

Autism Awareness Day falls on 2nd April. This is the day when people from all walks of life come together to spread the awareness about limitations of special children, the problems faced by their parents, teachers and their care takers and how they can overcome it to help their child to lead a normal life.

Social media plays a big role in spreading awareness, its by sharing, we can find light.

This year too, April being the 'National Poetry Writing Month' (#NaPoWriMo), a private poets' group on Facebook called 'The Significant League' encouraged the poets to submit the poems on Autism under the prompt 'Blue and Gold'

There was a huge response, such that Dr Koshi AV and Nalinili Srivastava, compiled

A Poetic Journey: An Insight into the world of Autism From the Poet’s Point of View.

Here is my poem that also appears in this anthology

A Graceful Dance

Pushpa Moorjani
There is breathless
Hush in the close
I see you move
Unaware of
Sound and fury of
My pride
Like a peacock
Spreading its wings
You dance to the rhythm
Nobody guessed
your struggle of
Stiff bones
And unstable mind
It was not easy
Many times
I almost died
To see you fall
After few graceful steps
On the floor
Unable to arise
Remember I said
“You cannot do
Leave it,
This art is not for you”
You blinked, confused when
I packed your anklets
Kept them aside
I blamed myself
For dreaming on a star
Guilt stung me like a thorn
I could not mould you
Into perfection
Of a happy child
But today,
Wide-eyed I watched
Through my night-smudged vision
You moved
Twisted and twirled
To a rhythm of your soul
Pulsing my heart
With melody
that cut like a knife
I could only hear
Audience around me
Applaud many times.
Tears blind me I see you shine
© Pushpa Moorjani. All rights reserved.
To read the poems by other poets you can visit their site at 'DIFFERENT TRUTHS"

Wednesday, April 29, 2015

Films On Cerebral Palsy

Some years ago, I had met Malini at the bookstore. I was more fascinated by her independence specially when she communicated using her ipad with a voice. She seemed quite intelligent although she had difficulty in controlling her stiff limbs.

Malini suffers from cerebral palsy characterized by an abnormal muscle tone, reflexes or motor development and coordination. The classical symptoms are spasms, other involuntary movements (eg. Facial gestures), unsteady gait, problems with balance. The body refuses to obey the mind and it is difficult to even reach for a drink without spilling it.

The new Bollywood film ‘Margarita with a Straw’ is inspired by Malini but focuses more on the intelligence and the emotions of a teenager.

Kalki who plays the wheelchair bound spastic person, has done a brilliant acting of living in a trapped body, dealing with her sexual urges through masturbation, love affairs and disappointments.

I was however surprised to see the reaction of people who saw the film. There was certain kind of discomfort and embarrassment, as if handicap people are not supposed to have such emotions. I am not sure if handicap people are too sex starved that they will indulge with every person (man or woman) who shows affection to them,(the impression that some people get while watching this film) but even if they do, it cannot be used as yardstick for judging other handicapped people.

Many films have been made on spastic people.

In 2012 Spandan, a Marathi film with English sub titles by Vegitha Reddy and Aman Tripathi, focuses on the frustration of parents of spastic child, who have to deal with the stigma associated with this condition.

In 1989,  My Left Foot, a drama film by Jim Sheridan tells the real life story of Christy Brown, an Irishman born with cerebral palsy, who could control only his left foot. He grew up in poor working class family but became a writer and painter.

1972, documentary film Goodbye CP by Kazoa Hara is another heart wrenching film on CP that makes you hate God for creating so much suffering. It focuses on how these people are ignored and disregarded in Japan. In one part of the film, the other men in the group tell about how and when they first had sex and what problem having CP has played in their lives.

From time to time, films are made on Special Persons who are differently abled to bring home the awareness that such problems exists and compassion is necessary to help them live as normal as possible without making too much fuss about it.

Thursday, December 18, 2014

Living with Special Needs In India

A lot has to be done to make 'persons with special needs' life more comfortable.

Every change happens with just one short step, a step of care and concern, a step to make a difference in somebody's life, a step towards progress.

Recently I have joined Local Circle. Various communities are being formed with common goals where people are eager to give in their support. Remember Modi government has promised 'Achey Din' but he cannot do anything alone. right? We, as citizens have to come forward to help india achieve 'Achey din'

For that purpose I have stumbled upon this page on Local Circle that discusses how we can contribute in making persons with special needs life simpler.

All of us would agree to the fact that life of people with special needs or disability is very tough in India. A lot needs to be done to bring the facilities at par with the international standards. The 165,000+ strong “Transform India with Modi” online community has come together to collectively identify the key issues, the root causes and solutions for people Living with Special Needs in India. This submission is being made to the Government Leaders and the citizen community hopes that the Government will implement the identified solutions to make life for Special Needs Citizens of India, easier and better.

Only the people who live with special children understand the problems these children are facing when they venture out on the road. 

Mentally challenged people shall have to be provided privileges like health insurance coverage and specialized hospitals to be provided. Parks for children and common/general at places near colonies to be built. Traffic jams to be controlled to make pedestrians to walk freely on foot paths. Medical facilities to be provided at reasonable cost – says Gedela Naidu 
Parents of the special children spend too much money on the treatment for physical and occupational therapies and would like the government to set up such facilities at a low cost.

The Government in the centre as well as the states need to sit down and plan the requirement of the disabled/specially abled people of the requirements of their training, utilization of their mental abilities and institutions for their treatment, so that we can use such members of our society in productive spheres of activities. Their families should also be trained regarding the handling of such people in day to day life – says Rajendra Kapoor 
Time has come to form the communities of like minded people with common goal and make the change. Do go over to Local Communities for Special Children and discover how you can make a change to bring India to 'Ache Din'

Friday, August 22, 2014

#IceBucketChallenge Is No Laughing Matter

Picture Source

 The first video of the ALS #IceBucketChallenge I saw on FB was of a young girl in a bikini, standing in her dark bathroom, pouring cold water over her head and then tagging her four friends to do the same or else donate $100 to the charity. In her comment box there were her friends who were against this idea of accepting her challenge.

I found it strange that people would do such silly things to raise funds in this way for the cause as serious as ALS.

Just then I read another friend’s status that read “Hit yourself on the head with a cast-iron bucket it to raise awareness about stupidity. Welcome to the #KickBucket challenge.”

It seemed stupidity to me too. What was this challenge and what was a big deal. I posted on my wall “What is the big challenge? Indian do have ice cold bucket bath everyday

As the day progressed, my FB time line was getting flooded with many such videos of known people accepting #IceBucketChallenge. It was going viral. In the trending column, it showed that donations to the A.L.S. Association, a Washington-based nonprofit that funds global research to find treatments and a cure for the disease, had surged since the challenge started trending in late July. The group said Thursday morning that it had received $41.8 million in donations from July 29 until Aug. 21.

$41.8millions raised for challenge of ice cold bath?

NO, people. do NOT post pictures of yourselves in bathrooms with a bucket, wet from a bath. NOBODY wants to see you that way, and it is NOT what the ice water bucket challenge is all about.” Screamed the status of yet another friend.

Was it a joke that people were enjoying? And why were educated people on my FB list doing it too?  Another friend wrote:

"Stop calling ice bucket challenge 'stupid' or 'useless' because it is not. Yes the water is getting somewhat wasted but it is more of an investment than wastage... Get your facts rather than criticizing every damn thing!!!" 

In conversation with my niece, it finally began to make sense. She told me about her 30years old friend (she knew in Bangalore) who was suffering from this illness. She said that he had two small kids and he had very little time to live.

When the disease strike some one close, a person we may know, we begin to feel its weight. We understand the seriousness of this disease.

Amyotrophic lateral sclerosis (ALS)—also referred to as motor neurone disease (MND), Charcot disease, and, in the United States, Lou Gehrig's disease—is a neurodegenerative disease with various causes. It is characterized by muscle spasticity, rapidly progressive weakness due to muscle atrophy, difficulty in speaking (dysarthria), swallowing (dysphagia), and breathing (dyspnea). ALS is the most common of the five motor neuron diseases.

One moment, a person is leading a very normal life, enjoying a game of basketball, and next moment he feels heaviness in his feet. He stumbles and falls, then experiences awkwardness when walking or running. Over the time, he starts experiencing difficulty in moving, swallowing, speaking or forming words. His muscles begin to tighten and there is exaggerated reflexes including an overactive gag reflex. Difficulty in chewing and swallowing makes eating very difficult and increases the risk of choking or of aspirating food into lungs. In later stages of the disease, aspiration pneumonia can develop, and maintain a healthy weight can become significant problem that may require the insertion of a feeding tube,

Although his mind remains sharp, ALS, that attacks his nerve cells, can ultimately lead to paralysis. Life expectancy is typically two to five years from the time of diagnosis.

The exact cause is not understood and there is no cure or treatment that can stop or reverse the disease. There is need to find a proper drug to cure the person from this disease.

I finally began to understand the seriousness of this disease and the importance of doing research. By ALS #IceBucketChallenge, a lot of awareness has been spread, by tagging people on social media, a united chain has been created and people are donating happily for this cause.

And all things said and done, there is humor behind this serious cause.


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