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.


Friday, March 14, 2014

How to conduct a cooking Class for Special Children

One of the activities that can be included in the training of special education is cooking.
 Teaching special children to cook is same as teaching a normal child to cook. The student may be 15years old or 20years but he/she has to be taught from the basics when he is introduced to the kitchen.
Cooking food is the fantastic way of getting children interested in healthy food habits.
Let me take you to a kitchen where a group of five students will learn to make Dhal, a traditional dish that is cooked in every home.
A proper environment should be created, where a group of children are seated comfortable (not standing together near the stove) in the kitchen.

The cooking session of Dhal can proceed with following steps

1.    Each child is given a graphic recipe of the dhal dish that they will make
2.    All the ingredients (moong dhal, water, coriander leaves, green chilies, garlic,  tomatoes, salt) are place in front of children on the table.

3.    Each child is asked to identify the ingredient by its touch, smell and taste
4.    Two children are asked to come closer to the workstation and are asked to wash the dhal with water.

5.    Children are asked to light the gas and keep dhal for boiling. One teaspoon of turmeric is added to the dhal.

While the dhal is kept to boil, the children can be involved in interactive discussion about hygiene, good eating habits or math on measurements of ingredients. Children can help in chopping tomatoes, chilies, cleaning of coriander leaves and in peeling garlic cloves.During the cooking session, children learn to apply math and reading skills as they follow recipes and measure the ingredients that they will use in the recipe. They also learn about food safety and meal planning skills. They learn about nutrition and healthy choices in fun and interactive way.

6.    When the dhal is boiled, it is lifted off from fire and churned well.
7.    Dhal is transferred back on stove.
8.    Chopped tomatoes, chilies and coriander leaves are added to the dhal.
9.    In a separate pan, oil is heated and chopped garlic is added.
10. Burnt garlic is added to the dhal.
 Recap of the method of preparation can be discussed with the class. Children are given a bowl ful of dhal to taste.

Some games can also be played as follow up after the session.

Moong Dhal
1cup moong dhal
2 cups water
2 chopped onions
2 green chilies
2 cloves of chopped garlic
1tbsp oil
salt to taste.

1.    Boil dhal in 2cups of water
2.    Add turmeric powder
3.    Keep it to cook for 15 minutes or till dhal is soft
4.    Churn the dhal and mix it well
5.    Add the chopped tomatoes
6.    Add chopped chilies
7.    Add chopped coriander
8.    Add salt
9.    In a separate pan, fry the chopped garlic till brown,
10. Pour it into the dhal
Serve with boiled rice.

Out of Box


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