Retarded Development

 Asha Kiran is a facility for the mentally challenged. For the common man, it is a mini fortress in the middle of Avantika, Rohini. To write this story, I had tried breaching in, on the pretext of making donations and feeding children, but the facility is impregnable for an outsider. After a series of permissions, I had managed a supervised tour to the institution. This is an account of what I saw. Written in 2007, the piece never managed to find any readers. This article was never published... yet it remains pretty close to my heart.

Shah Rukh Khan

Shah Rukh Khan may never come to know about his namesake in Asha Kiran Complex for Mentally Retarded, an institution run by the Social Welfare Department, Delhi.

Housed in a one-room cottage along with 32 other mentally challenged children, this eight-year-old (now may be 13, if he is alive) namesake of the Bollywood superstar feels isolated and lonely. He has been abandoned by his parents. Abandoned because he is mentally retarded and a burden to his family.

"He must be from the Nizamuddin jhuggi. Many children were displaced when the JJ. Colony was razed to the ground," says Dia Banerjee, the welfare officer at Asha Kiran, who is looking into Shahrukh's case. "Since he already had a low IQ, his parents didn't really care to look for him," she adds.

Brought in from Kasturba Niketan, a home for destitute, also run by the Department of Social Welfare, Shahrukh has an IQ of 30.

"A child qualifies to be normal if he has an IQ of over 70. Shahrukh has mild schizophrenia too, but we have started his medication and he is showing signs of improvement," says Banerjee.

Shah Rukh Khan, the Bollywood actor may always stand out in a crowd. But this little Shahrukh in his dirty white uniform and shaved head looks like all the other children dumped in the boys' wing of the complex.

But Shah Rukh hates his uniform, he tears it off, trying to pull a Salman Khan. "He doesn't like wearing clothes, he keeps tearing them off because of his schizophrenia," explains Banerjee.

While Shah Rukh poses for a picture, I try to engage him in a conversation. "Where is your heroine?" He doesn't answer. "Mera naam Shah Rukh Khan hai," is all he says.

"He is not much of a talker," says Banerjee. "He can at the most complain about other inmates or ask for something to eat. Rest of the time, he keeps quiet," she says.

Away from the glamour of Bollywood, this Shah Rukh lives in a world of his own. Not worrying about his fading career. But maybe about his parents who just abandoned him to get rid of their responsibility…

 "Looking after a mentally retarded child is a challenging task. Ideally, the entire family should take care of the child. It is a huge responsibility,” says Anand Rao, the superintendent of the boys' wing at Asha Kiran. “Most of the children and adults housed in Asha Kiran belong to poor families, who don't want to take up the responsibility of raising a special child,” he says.

The Way to the Fortress

The Asha Kiran Complex is situated in the busy Avantika area in Rohini, Sector 1. Hidden behind tiny shops and narrow, cluttered lanes, the massive, six-acre complex is quite difficult to locate in the first go. But poor, abandoned children with a low IQ, spasticity or any sort of metal disability find their way to this walled fortress.

 “The inmates sent here through the Child Welfare Committee,” says Rao. The process is simple; if anyone finds an abandoned child on the road, he hands him/her over to the police. The police are then supposed to track down his/her parents. And if they don't find any claimants, they send the child to adoption agencies or children’s homes. In case a child is discovered by an NGO or Childline (a 24-hour helpline for children started by Salaam Balak Trust) the child is kept in that particular NGO. But the real problem starts if the child is mentally retarded.

“No one wants to take the responsibility of a mentally retarded child. So invariably any child with any sort of a mental disability is sent to us,” says Rao. 

Mental Retardation?

The Persons With Disabilities Act 1995 defines ‘Mental illness’ as any mental disorder other than mental retardation; while ‘Mental retardation’ means a condition of arrested or incomplete development of mind of a person, which is specially characterised by sub normality of intelligence.

But 10-year-old Geeta (now she must be 14 or 15) doesn’t fit any of the above descriptions. She is visually impaired and lives in the girls’ wing of Asha Kiran. Geeta has no signs of mental retardation.

“I want to go home,” cries Geeta. “I am from Lucknow. We used to live in a house. We lost everything when our neighbour cheated us. We came to Delhi then,” she recalls. Geeta had then taken to begging at the railway station and was brought in by the police. The CWC had then referred her to Asha Kiran.

“She has a perfect IQ. She is just blind. I don’t know how CWC sent her here,” says Bimla Chaudhary, the superintendent of the girls’ wing. “We have written to the CWC, but haven’t got a response. Right now she is very angry with me because I am not sending her home. But her parents don’t want her back,” she adds.

Nine-year-old Vicky in the boys’ wing has a similar story. “My father’s name is Ramesh, my mother’s name is Aarti. I live in House no.82 in Raja Vihar. Please take me home!" he breaks down. “I don’t want to stay here,” says Vicky.

The welfare officer, F.C. Khandelwal surprisingly had a prompt explanation ready for this. “He might give a name and address now, but it will change after some time. Sometimes they just make up names and addresses,” he says.

 There are more such voices. Voices – which crash onto the walls of the fortress… never to be heard again. Avantika Complex is brimming with such heart-rending stories. Stories of lonely, lost helpless kids seeking an identity, a family, a better way of life.  

Lost in the crowd

With a sanctioned strength of 400 inmates, the complex has 695 children living there. “Though we have four homes with a sanctioned strength of 100 inmates each, we can’t say no to anyone. These people have been abandoned and have nowhere to go,” says Rao.

Asha Kiran has a School Home for Mentally Retarded and a home for Severely and Profoundly Mentally Retarded Persons, for both boys and girls.

The total strength of boys, including adults and children is 513, while that of girls is 282. “According to the sanctioned strength the number should have been 200 each,” says Rao.

To compound the problem, Asha Kiran is perpetually facing a severe staff shortage. According to the National Institute for the Mentally Handicapped (NIMH) guidelines, for every eight mentally challenged persons, there should be a team comprising one physiotherapist, one welfare in-charge and one aayah or house aunty. But in case of Asha Kiran there are just seven house aunties looking after the 12 cottages, which have an average of 30 children each.

“Our main concern is the hygiene of the child. Most of the children are not toilet-trained and so they keep sitting in soiled clothes for a long time. The house aunties, who stay here round-the-clock, have to ensure that they change their clothes,” says Rao.

“The house aunties or the watching ward are backbone of the institution. They even accompany the inmates to hospitals when they are ill. So if the house aunty of one particular cottage is in the hospital, the house aunty of another cottage has to substitute for her,” he explains.

 Not surprising then that with the severe over-crowding, space crunch and shortage of basic facilities, the young inmates are always falling ill. Asha Kiran has often been in news for the death of children in the facility. 

Manoj Kumar, the physician at Asha Kiran says that since most of the inmates cannot explain their problems, his job becomes even more difficult.

“We still manage to do a good job. The mortality rate has come down significantly. This year we have two deaths from the girls’ wing," says Kumar.

The mortality rate in the year 2006-07 was 12, while 29 children died in the year 2005-2006. (Recently there were four in a week. http://articles.timesofindia.indiatimes.com/2013-01-10/delhi/36257631_1_asha-kiran-women-inmates-deaths )

“In 1998 there had been five deaths in a day. But we have improved. We have introduced a medical screening system for all the inmates. It is a thorough medical check-up in order to detect their diseases,” informs Kumar.

Things have changed a lot since Rao took over as the superintendant for the boys' wing. “I am really proud of him. He stays in the complex and has dedicated himself totally to this cause,” says Gyanendra Shrivastav, secretary, Department of Social Welfare.

Rao, however is modest. “Taking care of these inmates is not a mere eight-hour job,” he says.

But still, about four-five children are taken to various government hospitals on an average everyday with problems ranging from epileptic attacks or respiratory diseases like tuberculosis. “They are accompanied by an attendant and are usually taken in our van or in auto-rickshaws,” says Rao.

This, despite the fact, that the Centre has three Maruti Omnis at its disposal. The drivers of the Omnis parked inside the complex usually disappear after lunch. If an inmate has to be taken to the hospital, he or she is taken in an auto-rickshaw to far flung areas like Shahadra or on a cycle rickshaw, in case the hospital is nearby (Sanjay Gandhi Memorial Hospital in Mangolpuri).

“We have given proposals for an ambulance and even a mini hospital. But you know how a government set up works,” rues Kumar, lending credence to the belief that anything related to the government or run by the government has to be dysfunctional. It is now taken for granted that a government-run institution has to be a mismanaged one. And when it comes to mentally challenged people it is even worse.

This is something that Sushma Malhotra, administrative officer of Matri Chhaya, an adoption agency for children below six years in Paharganj, learnt some time back. Malhotra decided not send Niny – an 11-year-old girl (now probably 15 or 16) suffering from delayed milestone- to any home for mentally retarded.   

Niny’s story

“No Asha Kiran or any home for Niny. She’ll go mad if she goes there,” is what Malhotra says firmly. "We had sent her to Jeewan Jyoti – a residential school for special children in Janak Puri, but she didn’t like that place. We thought she would learn something there, but it was of no use. She didn’t like that place and her condition worsened. She contracted some sort of an infection and developed lumps on her neck,” says Malhotra. “We had them operated soon after she came back in October last year.”

As she walks down the sunlit corridors of Matri Chhaya, Niny looks happy to entertain her visitors. The girl excitedly opens her book and counts aloud up to 100. The 11-year-old is mentally retarded and is probably a little better off than the four-year-old kindergarten kids, who can count up to 10. But that doesn’t bother her. She is just happy that she is at home in Matri Chhaya.

“This is her home. Why should she go anywhere else? She was brought in when she was just a baby and has been here since then,” says Malhotra.

The girl had been abandoned by her father. “Her mother died giving birth to her and when I first saw her she was in a very bad state,” recalls Malhotra. She had blisters on her body and was very weak. “We really didn’t think she would live. But we tried our best. And now just look at her… she looks like any other normal child,” she adds proudly.

It is probably the reason why Malhotra got her admitted to a regular school. For the past few months she has been attending classes in Guru Ram Rai Udaseen Ashram in Aram Bagh.

“We wanted her to interact with other normal children and be independent like them,” says Malhotra.

But like any other child, Niny too sometimes feels the need of parents. “All the children who are brought here get adopted, but Niny is left behind. No one wants to adopt a mentally challenged child,” says Malhotra.

 

No homes for mentally challenged 

Neena Macedo, the chairperperson of Palna, one of the most famous adoption agencies in the country agrees. “A child with a missing arm or any physical disability can find a home through overseas adoption but a mentally retarded child can only find refuge in a home," says Macedo. "There are very few government-run homes and those that already exist are over-crowded.

Palna houses about 28 mentally challenged children in their home in Civil Lines, Delhi. “Here we have a surveillance camera that keeps a tab on all these children and we make sure we take good care of them,” says Macedo. “But we can’t afford to keep more children. So we just have to send them to other homes. We know they won’t be adopted,” she adds.

Whenever Niny sees younger and healthier children being taken away by their foster parents, the only question she asks is, “Mere mummy papa kab aayenge?” A query that always renders Malhotra speechless.