One giant stride of sensitivity

Thanks to Anil Mudgal who runs Arushi and NGO for the welfare of the physically and mentally challenged children, that this great step taken by him and his team as helped thousands of them to attend school with respect from the capable children. This story was given to me by Anil when we met over for a cup of coffee where he explained the full idea and I told him the moment the Madhya Pradesh Government finishes printing them on the text books we will meet again and then write the story for the Hindustan Times. So after the text books for children had come to the open market with the printed matter on how to treat and behave with the physically and mentally challenged children in schools I went back to Arushi where I was a frequent visitor and got the whole picture for the below story in April, 2005.

This one little page in the school textbooks of the State will unfold a giant chapter in empowerment of physically and mentally challenged kids.
Advocacy for special children will take a giant stride with the flip of just one page listing their rights and ways to facilitate their integration into the academic mainstream that’s been added to the MP Text book Corporation’s books this year (2005-2006).
The first move of its kind anywhere in the country, the single page has a huge outreach. Of the 6.5 crore school textbooks for all the classes for the coming academic session, almost 35 percent will have this page, surpassing in scale anything that might have been tried before.
In the 2006-2007 sessions, all the textbooks will have the “Rights Page”.
Six years of continued lobbying with the State Government and MP Textbook Corporation by Bhopal based NGO Arushi that has been working for the visually & physically challenged, has finally bore fruit as School Education., Principal Secretary Anshu Vaish decided the time had come for the socially critical move.
Corporation MD SK Mishra responded immediately. Experts on issues concerning differently-abled kids chalked out a list of 17 dos and don’ts. These include tips like seating disabled kids in front row of a class, involving them with all the possible activities on mentally challenged kids, routine contact with the parents of such children.
If the kids are hearing-challenged, they should be able to see blackboards, teachers faces, lips and hands clearly, should wear heir hearing aids all the time and use of drawing aids for teaching.
For the visually challenged, use of Braille, apprising the kids with the school environment and utilities like drinking water and toilets and maintaining hurdle-free environment have been recommended.
For wheelchair bound kids, special low design of water taps, fountains and toilets and construction of ramps for wheelchair movement etc have been suggested. The instructions include treatment of children with speech-impairment and giving them a patient hearing. Teachers have been urged to tell other children not to make fun of the differently-abled children and be friendly with them.
Apart from all these points the page also asks the school to ensure that once a month a special class be held to teach the importance of the abled children on how to treat and behave with the physically and mentally challenged children.
And for Anil Mudgal and Arushi, this page was another feather in his cap as he has toiled very hard not only on this project but also various such others which give and sense of equality for the physically and mentally challenged.

Visually challenged makes move with 'Vishy'

This story was another one which was provided to me by Anil Mudgal, a very good friend who runs ‘Arushi’ a NGO for the welfare of the disabled and specially the visually challenged. One evening when I was taking an evening walk near the office I happened to bump into him and he was narrating that he would be leaving with a 15 members blind students for Chennai to meet Chess Grand Master Vishwanath Anand. And so this story was written.

“The Gift given at the year end, Lifted the motherland’s glory to unachievable heights, Said the mother in joyous mood, Keep this wonderful work always as high, Hey Anand remain elevated in this century, Happy millennium and a happy new year”

This translation of a Hindi poem penned by the visually challenged Radheshyam Panwariya (23) will be presented to the world chess champion, Vishwanath Anand, in Chennai on February 5, 2001. Do not think that what he does only is writing poems in awe and admiration. He has the gumption to throw gauntlet at the world champion across the chessboard. February 5 springs up another such moment for him to match his brain with Vishy.
The last time Panwariya played with Anand was in 1999. He played the white to lose to the Grand Master in 42 moves. “This year I am going well prepared to give at least a scare to the tiger of chess,” says Panwariya.
“I have done my home work well and made up some moves which the Grand Master will appreciate,” he added like an exuberant fighter.
While playing the last time Panwariya started with king pawn only to loose his queen Knight within five moves. “I was offensive though in the middle of the game Anand advised me to cool off. This time I will play safe and try me best to protect the knights as long as possible,” he said.
“if I can delay his victory this time, it itself is an achievement,” says he who started playing Chess at the age of 12. he thanks Arushi, an NGO working among the visually challenged in Bhopal for providing him all that is needed to stay ahead in the brain game.
On being asked about offering the white to Anand to play with, he laughed with a quip, “Do you want me to become a sacrificial goat? “Anand is the king in the white game and I will be finished in ten moves.”
After the game in 1999, Anand shared a few tricks of the trade with me. I have always kept them in my mind while playing practice matches with the computer. Though I have won a few practicing game, I lost many as well.” Anand did tell me the last time that he lost a game in five moves to his mother, when he had made some rash moves seven years ago. “Playing safe will always make the opponent think and in the process there is every chance that he makes a mistake on which you can make up moves to victory,” said the Grand Master.
On asked what he would achieve by playing with the world champion, “more knowledge about the game” was his reply.
“The Grand master is a good human being and so is his wife, Aruna. They spent a whole day with us the last time an hopefully they will repeat the same this year,” says Panwariya.
Though Panwariya knows that he will loose the game, he says, “If things go well in the coming years, I will keep challenging the Grand Master time and again till I win.”

Battling a Killer Within

During my first day of social work (photography Classes) for the blind children of Arushi in Bhopal in 2003, I met two lovely looking kids who were brothers. One was rolled into the class room on his wheel chair as his younger brother was gleefully walking behind him waving to his weekend activity mates. After the class I walked up to them and started to chat only to listen to their sordid story and how they are facing death and also challenging it through their grit with which any child would not do with ease. I visited them at their home and spoke to them at length. This story was written keeping in mind that they would get help and they did for sure, from multitude of readers who called me up the next day asking for their address.
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Brothers Deep and Akash are unfazed by the special care they are getting from everyone around them. The two shy children paint and play on a computer at a social organization regularly, while their grandparents wait on them. The special care could be short-lived, especially for 10 year old Deep, who experiences an advance stage of Muscular dystropy.
Deep can no longer stand and needs help even to change his position while sitting. This wasn't the case till five years ago. Deep was born normal and played about like any other little boy in the neighbourhood. ‘But then gradually, his walk changed and he began walking on his toes. Some neighbours with whom we had worked brought this to our notice and that’s when we got him tested. Deep was diagnosed with muscular dystropy, that causes degeneration of muscles. Then, Irish physiotherapist Edwina Carney, who worked with us for two years, confirmed the diagnosis,’ says Namita Gite, a volunteer with Arushi, a social organization working for physically challenged children.
Deep also went to a neighbourhood school in Panchsheel Nagar where he lives. ‘But he had to discontinue the academic session as he can no longer walk,’ says his grandmother. ‘We’ve have been to so many doctors, masseurs. We even tried witchcraft in the Kumbh Mela at Ujjain last year and approached every body with a possible cure.’ But things haven’t improved. Deep’s grandfather says hopefully, ‘if he just begins to stand up on his feet, he’ll be able to walk again.’ Gite says, ‘either the doctors they visited didn’t tell them properly or they didn’t understand what they were told. The doctors keep prescribing tonics and other medicines, but it is misleading as nothing would help.’

Confirms oncologist Dr Shyam Agrawal, 'there are eight-nine types of muscular dystropy and all are incurable. No diet or special supplements can help prevent the gradual and progressive weakness of the muscles, especially the girdle muscles which are first affected.’
Younger brother, Akash, can still walk and run but the disease has hit him too. Though the grandparents are still ‘suspecting,’ Gite confirms that he too is afflicted.
The medicine part of the story reaches a dead end here. Says Dr Agrawal, ‘gene therapy is still being worked upon in the West but India has a long way to go.’
The human tragedy has however just begun. Ever since the condition of the eldest son Deep began deteriorating, the mother of four children (Deep and Akash have a brother and sister too) has begun to keep ill frequently. The father, a paan-stall owner, had lost his kiosk almost three months ago. The family is dependent only on grandfather’s merger earnings.

What is muscular Dystropy?

Muscular dystropies are genetic diseases characterised by progressive weakness and degeneration of the skeletal muscles which control movement. Among the many forms of muscular dystropy, some noticeable at birth (congenital muscular dystropy), other s in adolesence (Becker MD), the three most common types are Duchenne, facioscapulohumeral, and myotonic. Each differs from the other in terms of pattern of inheritance, age of onset, rate of progression, and distribution of weakness.
Duchenne muscular dystropy primarily affects boys caused by mutations in the gene that regulates dystrophin - a protein involved in maintaining the intergrity of muscle fibre. Onset is between 3-5 years and progresses rapidly. Most boys become unable to walk at 12, and by 20 need a respirator to breathe.

Sightless get new view of Sanchi Stupas

This story and picture of the then Leader of opposition of Sri Lanka Ranil Wickramasinghe and that of the Blind children of the Arushi were a double whammy for me and one can say just landed on my lap while I was a private visit to the Sanchi Stupa with my wife in November 2000. First their was a huge crowd surrounding the former Prime Minister of Sri Lanka and later I saw some blind children gathered around the board and trying to read what was written in Braille to their in-charge. My passion for photographing them started much to the annoyance of my wife. I still went ahead and started to speak to the children and to my surprise I landed a national level story for the underprivileged.
So after I went back to Bhopal and released the pictures of the Sri Lankan’s visit to the holy Sanchi Stupa and later asked my Editor if I could go ahead and write about the blind children’s involvement in putting up a board in Braille to help the other visually impaired visitors to this world heritage site in Madhya Pradesh. Below is the Story which on the front page of the Hindustan Times all India editions and the picture of the Sri Lankan leader which was used in the Bhopal Edition of the Hindustan Times.

RANIL WICKRAMASINGHE LEADER OF OPPOSITION IN THE SRI LANKAN PARLIAMENT GOES AROUND THE SANCHI STUPA BEFORE BEING BLESSED BY THE SACRED RELICS OF ARAHANS SARIPUTTA AND MOGGALLAN THE CLOSE DISCIPLES OF LORD BUDDHA AT SANCHI STUPA DURING HIS VISIT TO INDIA IN THE MONTH OF NOVEMBER 2000.


Sightless get new view of Sanchi Stupas

Even if Radheshyam Panwaria cannot savour the visual splendour of the Sanchi stupas, he can at least delve into its glorious past now. Courtesy a novel initiative by the Archaecological Survey of India (ASI), Bhopal Circle and an NGO Arushi, a brief on the world famous Buddhist monuments has been put up in Braille and a wheel chair provided at the site for the physically impaired.
Thousands of others afflicted from visual and other forms of physical disability can look forward to visiting this World Heritage monument built by King Ashoka.
There are also plans for putting up more Braille boards at six other archaeological sites through out Madhya Pradesh by the end of next year.
For Starters, this facility has created history in itself, as it if the first of it's kind in the country for the visually impaired where the incidence of partial and total visual disability is very high. This could well be a learning experience for both the governments at the State and the Center to set information boards in Braille at various other historical sites - starting maybe from the Taj Mahal in Agra?
Anil Mudgal, a volunteer of Arushi, mooted the concept. He was bombarded with questions every time he took blind students to Sanchi. "This time when these students were given these details in Braille, they were satisfied. They did not forget anything they had learned through the Braille and this is what provoked me to push this project through."
Dr Mishra said that he was aware of this facility, having seen it in Munich, Germany and at a Roman site, which he visited some years ago. "When the Arushi people approached me, I was thrilled and we went ahead with the project. I feel it will be a success."

Dr Mishra said that the ASI - Arushi endeavour was to put up Braille details and the wheelchair facility in world -famous sites like Khajuraho, Mandu and Bhimbetka. ASI and Arushi are also coming up with other useful projects like information on historical sites in the Braille book format and the audio-cassettes to help the physically challenged. Dr Mishra will be shortly requesting his fellow officers of other ASI zones to make such facilites for the disabled. He feels that it will not be a difficult task since the cost factor is minimal.
Radheshyam, who was seen checking for grammatical or spelling mistakes on the Braille board at Sanchi said that these efforts would "help people like us." Incidentally, he would also pit his chess skills against none other than Vishwanath Anand some time next month!