Saturday, July 9, 2005

Down, not out

This is the most common cause of malformation in a new born. Down’s syndrome is not a mental disease. It is a congenital disorder. It cannot be cured but a loving home and specialised care can improve the condition of those suffering from it. Sukhdeep Kaur on families and activists who have stoically taken on Down’s syndrome.

— This was sent to the Army HQ by Maj Navneet Vats of the 4/3 Gorkha Rifles..

MAJ Navneet Vats was awarded the Sena Medal for Gallantry last year. He was killed fighting militants who had stormed into the BSNL building in Srinagar. One of his juniors, J. Chanda, wrote later: "Navi sir was either loved or hated, there were no in-betweens. He was extremely misunderstood by a majority of his course mates and students. However, those close to him were privy to his fears and often felt that Vats was unconsciously trying to cover up for the inadequacies of Nimish, his younger brother, a special child."

Nimish, now 20, suffers from Down’s syndrome. The misfortunes of the Vats family are being chronicled not to cause despair but to ignite hope. An ailing wife, a child with a handicap and a son lost forever, but nothing was disastrous enough for Major Vats’ father Neeraj Vats not to look for light amidst all the darkness.

He left his bank job to work for the mentally challenged. He likes to call them specially-abled, not disabled. His special son is now the pride of his life and motivates him towards a larger mission – helping others struggling with such children.

Down’s syndrome, also called Trisomy 21, is the most common cause of mental retardation and malformation in a newborn. Such children have an extra pair of chromosomes. What causes the presence of the additional chromosome at the time of conception is still unknown. While three per cent of the population worldwide suffers from various mental handicaps (cerebral palsy, autism, multiple disabilities, mental retardation), the incidence of Down’s is believed to be one in 1,000 live births worldwide depending on contraception and termination attitudes in different communities. The Down’s Syndrome Federation of India puts the ratio at 1 in 800.

According to studies, such babies are born at the same rate into families from all social, economic and racial backgrounds and to parents of all ages, although it is believed that the risk of having a baby with Down’s syndrome increases with maternal age.

Unlike mental illnesses such as schizophrenia, depression or excessive compulsive disorder, the mentally challenged do not suffer from any disease so can never be cured. Theirs is a condition that can be improved through training, which is why their parents can do what no rehabilitation centre or institute can – provide them a loving home and work with unfailing faith to see signs of improvement.

Each such child is unique. The range of abilities and disabilities, characteristics, interests and achievements among them vary widely. Ruchi Bali, a resident of Sector 40, Chandigarh, is a striking example of how close such individuals could be to what for us is normal behaviour. This 20-year-old can write, read, cook, clean, watch her favourite soaps on television, give expert comments on them and even tease her mom and younger sister. Ruchi also manages little children at the institute where she is being trained. She would first like you to complete one topic before you can touch another and as you prepare to leave, would like to know your cell number. This is not all. She calls up her peer, Chinky Bhatia, to update herself on what’s hot and happening. Chinky, on her part, is a suave, well-dressed, fashion-conscious teenager who likes Shah Rukh Khan, shopping and eating outside. She finds her father, reputed cardiologist B.S. Bhatia, very cute, which also explains her frequent visits to the clinic. She is the second daughter of the doctor couple, who have refused to allow negativism to creep into their lives but go about their business of attending to the medical problems of others tirelessly.

Ruchi’s younger sister is normal as is Chinky’s elder one. Sibling rivalry in such cases can be acute, especially if the challenged one is getting all the attention. Not in both these cases though as both Chinky and Ruchi are the apple of their sisters’ eyes.

It’s said nothing unites like misery. Parents of mentally challenged children throughout the world have pooled in their resources to form various associations to help themselves and their children. Inclusion International is one such global federation of family-based organisations that advocates human rights of people with intellectual disabilities and their families worldwide.

Parivaar, based in Bangalore, is the National Federation of Parents’ Associations for Persons with Mental Handicaps. From having 50 associations a few years back, its membership has grown to 130 this year. In the last week of February, Parivaar’s all-India head, J.P. Gadkari, along with Jan G. Vortsman, a representative of Inclusion International, were present at a workshop in Chandigarh’s Government Institute for the Mentally Handicapped. Vortsman sounded more Indian than Dutch when he spoke to the troubled parents. You can do what no miracles can, he said. Inclusion International would like to take the parents’ movement to the rural areas and the not-well-to-do families, as spreading awareness was the key to making such individuals more acceptable, socially and legally, Vortsman asserted.

Gadkari was a member of the drafting committee for the National Trust Act for the Disabled, which came into being on December 15, 1999.

Surprisingly, there was no legal cover for the mentally challenged till 1995. The Indian Lunacy Act, 1912, was repealed in 1987 and replaced by the Persons with Disability Act of 1995, which for the first time provided the mentally challenged some legal rights. But again, it had no provisions for their rehabilitation, education and welfare. It was only after many NGOs demanded and mobilised support for a separate Act for the mentally disabled that the National Trust Act was enacted in 1999. This not only ensures but also works for the welfare of persons with autism, cerebral palsy, mental retardation and multiple disabilities, says Gadkari, whose mentally challenged son, now 34, continues to be his inspiration.

Sadhna is one such parents’ body in Chandigarh that works for mentally challenged children. Bhavna Tayal, who heads Sadhna and has a daughter suffering from Down’s syndrome, says they are fighting all possible financial, administrative and legal bottlenecks to be able to see their dream of providing a home to these children come true. After all, one question that nags them often is what after they are not there for them?

Sakshi G.S. Sodhi, a Mumbai-based social activist and event organiser, is yet another example of hope trouncing despair. She runs the Sakshi Foundation for the challenged. Her 10-year-old son Suyash, who too suffers from Down’s syndrome, embarked her on this ambitious journey and now she intends opening up an institute to train the challenged in hotel management, accounting, gardening, knitting, tailoring, cooking and beauty treatments.

She says certain children are borderline cases. Especially those suffering from Down’s syndrome have exceptional social intelligence and can be trained to do certain tasks with perfection. A few of her students, she declares, are working at Mumbai’s prestigious Marriot Hotel and Kamat Club. No, their bosses are not complaining, only asking for more, she adds, beaming with pride.

While Mumbai alone boasts of more than 135 schools for such children, the Sakshi Foundation claims it takes up where others leave. "There are many organisations which look after these children, impart them toilet training and teach them table manners, special skills and provide vocational training to them, but we also try to help them earn a living," Sakshi says.

"I also have a daughter but it is Suyash who helps me clean the dishes and the house when my bai has a day off," she says.

The title of the book, Count Us In, authored by Jason Kingsley and Mitchell Levitz, both of whom suffer from the syndrome, says it all. It is a small part of their genetic make-up and integration into the mainstream community that will determine who these children become once they grow up. Like us, they love life and wish to be a part of ours.