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How a child with special needs grows up as a young adult

How does she express love and desire, and how does she deal with rejection?

Written by Nidhi Sinha | New Delhi |
February 22, 2015 1:00:42 am
special-main special young adults experiencing sexual desires and puberty find it hard to judge what is unacceptable behaviour.

It’s a sunny day in Gurgaon, but Saloni doesn’t want to step out of her cold, dark classroom where she is sitting alone. Outside, at the institution for special young adults she attends, is a cheerful crowd of students. Her teacher encourages her to join the gang but she doesn’t budge. The 20-year-old is deeply infatuated with one of her teachers, and is upset that she cannot get his exclusive attention. Even when she steps out, she sits in a far corner, where she launches into a tirade against the male teacher. Her teacher listens to her attentively, trying to placate her and explain how she can get a grip on her feelings.

For all young adults, a key developmental stage is the awareness of their own sexuality. This is what makes sex education an integral part of puberty. But this young woman grappling with unrequited longing is also intellectually challenged. And though her cognition level is quite high, it makes it difficult for her to understand desire, sexual longing and the boundaries that come with it. Like most young adults with special needs, she is vulnerable to abuse and sexually transmitted diseases — and, of course, hearbreak.

Special young adults experiencing sexual desires and puberty often find it hard to articulate their feelings, and to judge what is unacceptable behaviour. They need consistent supervision and counselling. But many caregivers and parents are scandalised by their need for companionship and love, and often, the first reaction is denial. For instance, Saloni’s Gurgaon-based parents provide for all her material needs, including access to cellphones and computers, but have never responded to the school’s request to address her sexual needs.

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When director Shonali Bose was out with her cousin Malini Chib, who suffers from cerebral palsy, for a drink in London, she asked her what she wanted for her 40th birthday. Chib’s reply was instantaneous: she wanted to have sex. It led Bose to her film Margarita with a Straw that is slated for release this summer in India. “What inspired me was Malini’s honesty about her sexual needs and desires, her absolute feisty vehemence that she had the right to explore these,” says Bose. The film is about a young woman with cerebral palsy who falls in love with a blind girl. “At the world premiere in Toronto, an Indian father came up to me and asked whether he should try to arrange a sexual partner for his disabled 25-year-old son. It was fantastic that the film did that,” says Bose.

Most counsellors say that one of the surest ways to go about sex education for the specially abled is to create a dialogue that involves parents and the young adult. This involves teaching her concepts of privacy and personal hygiene and letting her know when it is okay to masturbate. It also involves introducing them to sports and other creative pursuits to work off their energy.

Sensitising staff and teachers is as important as training parents. While there are some organisations such as Jan Madhyam and Action for Autism (both Delhi-based) that do both, most government-run training programs for teachers of special children still see sexuality as “bad behaviour” — as do many people in society. “As a result, no training opportunities are provided to learn socially appropriate behaviour,” says Neera Chawla, principal, Muskaan, a Delhi-based institute that trains young people with intellectual disability.

Young adults at Muskaan, Delhi, an institute that trains people with intellectual disability Young adults at Muskaan, Delhi, an institute that trains people with intellectual disability

When Seema Mishra, 49, a housewife from Delhi, saw her 14-year-old son Sankalp, who is autistic and communicates only in monosyllables, masturbating last year while playing computer games, she knew the time had come to broach the topic. But what she was not prepared for was the reaction of the domestic help . “He kept telling my son that it was bad and he shouldn’t do it. What he didn’t understand was that it was a natural urge, and that my son did not realise that it’s something to be done in private,” she says. So, she had to counsel not just her son, but also her help. Since then, Sankalp, who loves listening to Jagjit Singh, has learnt to take cues from her mother to figure out if his behaviour with women visitors is out of line.

Last year, when Rahil Verma’s counsellor told him that he could “love” only his family, he was distraught. The 24-year-old, who suffers from autism, had been going to his counsellor for nearly five years and was extremely fond of her. He would keep professing his love for her and hug her whenever he wanted to. “Autistic people can sometimes become obsessive about things or people,” says his mother Minnie, who had to discontinue the sessions immediately. Rahil has never displayed any obvious need for physical intimacy, but like most young men, he loves the company of women.

Rahil Verma (right) was shattered when his counsellor told him he could “love” only people within his family Rahil Verma (right) was shattered when his counsellor told him he could “love” only people within his family

Shanti Aulakh, co-founder of Muskaan and former professor of psychology at Lady Shri Ram College, Delhi, was more creative when it came to her son Puneet, who suffers from Down Syndrome. When he was about 13, Aulakh sensed he was developing an interest in girls. She got a bunch of film and women’s magazines, asked him to cut out pictures from their pages and make a collage. She also let him choose the movies and TV programmes he wanted to watch. She organised a room for him and tutored him on the necessity of privacy.

Then there are a set of parents who want to go the extra mile. Aparna Das, founder of Dehradun-based Arunima, a residential home for adults with autism, says, “Some parents are looking for an acceptable and safe way of getting sex available for their children, such as seeking an escort service.”

But not all parents are as understanding or accommodating. “Some parents believe that disability bure karmon ka phal hai (a result of bad deeds in one’s earlier life), and force their children to watch only spirituality channels,” says Shubhra Mukherjee, founder, Udaan, a Delhi-based organisation that provides rehabilitation solutions for the disabled. Das has come across parents who would threaten their children if they are found rubbing or touching themselves.

If the natural attractions they feel are not tempered by training, then, sometimes, their behaviour can cross accepted social limits. A young student at a south Delhi institute has a habit of approaching a woman sitting alone and squeezing her breasts from behind. His counsellors suspect that he has possibly witnessed abuse with his family or acquaintances, but the student is intellectually disabled and lacks oral communication skills, and it makes interactions with him very difficult. His parents too have refused to cooperate with the counsellors, resulting in no headway.

Sexual abuse is another area of concern. In 2004, Muskaan started a sex education class for girls. “There was pindrop silence in the otherwise chatty, lively group as we started talking about good-touch and bad-touch,” says Chawla. The teacher observed that one of the girls, about 13, who was usually inattentive and unresponsive, was concentrating really hard. Later, the girl revealed that a driver who used to drop her and another girl to school took turns to abuse them on one occasion when there was no guardian accompanying them. “She never had the words to express her trauma before because she didn’t fully understand what had happened to her,” says Chawla. In such cases, consistent counselling can help. The young women are taught to understand the connotations of different situations, and how to say “no” to any unwelcome overtures.

***
Sexuality manifests itself in different ways for special young adults and may not always be a desire for sexual intercourse, nor always about inappropiate transgressions. A pair of youngsters in Muskaan, for example, express their love through silence and gestures, and sometimes by just sneaking a bar of chocolate in the loved one’s pocket.

Reema, a woman in her 20s with intellectual disability, works in the canteen of a school for special children. Every day, she puts away a portion of lunch for Sagar who is enrolled in the same school. The teachers say they have never spoken to each other, but they all know that they like each other.

Das’s sister Arunima, after whom her institute is named, gets excited when she sees handsome young men. “She knows how to differentiate between strangers and known people, and whom she can hug and whom she can’t. But she sometimes makes exception for people she likes and tries to get their attention,” she says, laughing.

Many of the young people express their longing through tiny gestures. “The mere act of pushing back hair from somebody’s forehead could be an expression of love, especially for people with autism. Their expressions are usually need-based and their social connections are very low. In fact, the most they connect is with us, the caregivers,” says Das.

While many talk about marriage, it is without a conception of what it comes with. Thirty-three-year-old Punchika, who is intellectually and physically disabled, is keen to get married because she finds the prospect of acquiring another “mummy” inviting. For her, a partner implies a new caregiver. She hopes that the new mother would give her the same space and affection that her mother, Vandana Kumar, 60, has always accorded her.

At 17, Shrishti, who suffers from attention deficit sensitive disorder, longs to dress up as a bride and have a baraat at her doorsteps. “She finds bikers very attractive, though she’s yet to show any overt sexual urge,” says her mother Kavita Tomar, 46 who lives in east Delhi. Tomar has enrolled Shrishti in various sporting activities — she swims, skates and cycles — to keep her occupied. “Diversion is a constant tool, as it controls her hyperactivity,” says Tomar.

For Pooja, however, the decision was not so simple. Now in her 30s, she suffers from cerebral palsy and partial paralysis; her speech isn’t clear but her intellectual capability is sound. She was in her early 20s when her younger sister got married. At the time, she pleaded with her parents to find her a match. “The sad part is that the parents never even tried to do so. They assumed it wasn’t possible,” says Mukherjee. Pooja, who cleared her graduation privately, now works in Delhi.

It is also important, say counsellors, to make the young adult stay rooted to reality. Marriage might not always be feasible, but friendship and companionship are possible. “We explain to them the importance of partnership, the role that both need to play in making a marriage work, and how important it is to be financially independent,” says Chawla.

The reactions to such common sense can sometimes be heartbreaking. Chawla once explained to a 20-year-old that “apne pairon par khade ho jao, tab shadi ke bare mein sochenge (Stand on your own feet, and then we will think of marriage) ”. After a few minutes of deep thought, he came up to her, pointed to his feet, and said, “Par main to apne hi pairon pe khada hoon (But I am standing on my own feet)!”

(Some names have been changed to protect identity)

(The story appeared in print with the headline Have I Told You Lately?)

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