Mumbai-based Kamal (name changed) is the mother of Renuka (name changed), who has Down’s Syndrome, a genetic disorder that leads to a mild to moderate intellectual disability. She has enrolled her teenage daughter into a special school and gives her a lot of love and attention so that she can lead a good life. Though prepared to face all the challenges that come with Renuka’s condition, there is one ‘problem’ that foxed Kamal. “One afternoon, Renuka came home with two of her shirt buttons undone. I was very concerned but couldn’t ask her directly. So as she was talking to me about her day I casually inquired about it. When she told me that a boy in class had wanted to ‘see and touch’ her I panicked and questioned whether she had tried to stop him. Renuka looked at me with mild confusion and replied: ‘Why? I liked it.’ I was completely taken aback with her answer. I had never realised that I would have to talk to Renuka about issues related to sex like regular teens,” recalls Kamal.

Alarmed at this new situation she found herself in Kamal decided to speak to a few other parents to find out if their children too were showing signs of becoming sexually aware. “When I chatted with some mothers they shared similar incidents with me. They were all worried as they did not know what to do,” she adds. Though this was an entirely new experience for Kamal, fact is that it’s not uncommon to find family members and caregivers of people with mental and physical disabilities struggling to find ways to deal with such ‘situations’. What they fail to realise is that once children with Down’s Syndrome, cerebral palsy, paraplegia and quadriplegia or any other developmental disorder, hit puberty they have the same kind of desires as their counterparts. The only difference is that owing to their condition they are unable to express their feelings.

In an interview, Malini Chib Alur, a disability rights activist, who has been battling cerebral palsy for nearly five decades now, has talked about these challenges and the society’s reluctance to accept reality. The author of ‘One little finger’, which details her personal struggles, has observed that “society thinks it is enough to include disabled people. But what about including their physical and emotional needs? Once when I had said that I too have sexual desires and people around me had asked: ‘Why would you need sex?’’’

As per Census 2011, India has 1,505,624 people suffering from different mental disabilities. While the particular problems of those with cerebral palsy, a neurological disorder that makes body movement and speech extremely difficult, are unlike those with other mental disabilities, when it comes to the issue of sex, the general perception is that because they are child-like they would not feel the need for physical intimacy.

And if you thought that the Western world understood the sexual needs of the mentally disabled better, then think again. Similar ignorance and prejudice exist there as well. Mumbai-based Dr Shubhangi Parkar, Dean of KEM Hospital and Head of the Psychiatry Department, has many parents coming to her seeking solutions to what they call as their children’s “misbehaviour”. She reveals, “They feel extremely embarrassed when their children do something inappropriate in a public place. Boys, in particular, tend to masturbate in public, which can become quite mortifying. In such times, most people resort to reprimanding or even beating the child. Many can’t understand how their teenage son, who is ‘only a child’, can have such urges!”

Not just home folks but even teachers at special schools are not equipped to handle the sexual problems of these youngsters. Parkar suggests that “besides regular training these teachers should be taught how to deal with such situations as well”.

Adds sexologist Padmashree Dr Prakash Kothari, “We need to accept the fact that children, including those with mental disability, will be curious about sex. It’s only natural. What is needed is a sensitive approach and efforts to guide them to understand the notion of privacy.”

Both Kothari and Parkar admit that though there are instances abroad of interventional therapists and counsellors addressing the issue, even they haven’t been able to cope with it. As Parkar puts it, “Sexual excitement can’t be controlled with medicine. If the child is already undergoing psychiatric or any other physical treatment, maybe some calming medication can be administered. But these definitely aren’t long term solutions to putting a stop to the so-called embarrassing activities. The best course of action is to talk it out and make the child aware of what s/he is doing. But I know there are difficulties in communicating something like this to children with very low IQ.”

According to a report by Advocates for Youth, a Washington D.C.-based organisation that champions efforts to help young people make informed and responsible decisions about their reproductive and sexual health, there are three universal, commonly-held myths associated with people with mental and physical disabilities – they do not feel the desire to have sex, they are child-like and dependent, and they are oversexed and unable to control their urges.

Such misconceptions and myths not only pose a problem for them but can, in fact, endanger their lives. And they need to be tackled at the parental level. Sexologists, psychiatrists and counsellors are of the opinion that parents have to step in, accept reality and spend time with their children to teach them the basics of sex so that they learn to differentiate between good and bad touch in order to safeguard themselves from abusers. If she has to help her daughter, Kamal will need to break free from her apprehensions and do away with false impressions to make Renuka comprehend her feelings.

( Women's Feature Service)