“Meyer sex ta komiye din Daktar Babu” was the urgent plea of a father to me. It was a typically busy Out Patient clinic and the rough meaning of what the gentleman requested was that I should do something to reduce his daughter’s libido.
There was a background to this request. Neelam, whom I had known for a few years, was a 17-year-old girl. She had drawn a picture of genitals with a love sign next to it, with a classmate’s name inside the heart. She had done this in school, during recess. A teacher saw the drawing and, understandably, did not take to it too kindly. Neelam could not understand what the fuss was about. “I only drew a picture, so I cannot understand what the ballyhoo is all about”. But that was vintage Neelam, whom I had grown fond of over my years of knowing her. She is a girl with odd social skills, very stilted in her communication and loved to use archaic English words in conversation. She has a fondness for reading about the Second World War and penguins. She has Asperger Syndrome, which is a variant of Autism, so she was poor at ‘mind reading’ and quite concrete in her interactions. The ‘ballyhoo’ that left Neelam perplexed had to do with the many stereotypes and biases that we have.
Neelam was bullied in school because she could never fit in. Hence, she chose to isolate herself in the library during breaks. No one had ever spoken to her about sex, sexual feelings and what needs to be private and what can be done in public. Children, while growing up, learn about social etiquette through observing others. For children like Neelam, this is difficult, because of their condition. Many rules and regulations of social interaction have to be explicitly taught to them. The school which she was attending was typical of our industrial age, soulless rote-learning factories. A couple of years ago she had asked her teacher in Biology class whether her parents had had sex in order to conceive her. For Neelam, it was an honest question and nothing else. Neelam and other persons with Autism, have what is known as an ‘invisible disability’. They often do not understand that some actions or conversations are best not followed through with.
One of the consequences of having a disability is the notion of ‘presumed non-competence’. We automatically assume because someone has a disability like Autism, that they are incompetent to decide for themselves.
The adults who knew Neelam well, knew she had Autism and hence avoided conversing with her about sex, dating, falling in love etc. This was probably borne out of a presumption of non-competence. She was not ‘normal’ and hence talking to her about sex, relationships, dating, etc was like wandering into unknown territory. We assume that people like Neelam are not ‘fit’ to handle information. Neelam is just an example of thousands of young people like her who have what the medical community describes as Developmental Disorders. It is an umbrella term which includes Autism, Intellectual Disability and ADHD (Attention Deficit Hyperactivity Disorder) amongst other conditions.
Society has always ignored and denied the rights of people with disability. Many of those historical injustices are being addressed and at least partly rectified. Amongst those rights that are denied, sexual rights remain one of the more complex and taboo areas. Through my work as a clinician working with children and young people with developmental disorders, I have become more aware of my own and societal blind spots in denying access to knowledge and information about sexuality for this group.
There is ample awareness about helping ‘normally’ developing young people to negotiate puberty and familiarising them with issues of sex, sexuality, gender, and life skills. However, there is virtually nothing on the same themes for young people who have different abilities or developmental disorders. Why?
Apart from the aspect of denial of rights and access to legitimate information there is another dimension to not engaging with young people with developmental disorders on educating them about sexuality. All forms of abuse, including sexual abuse are much more common in children and young people with disability. Hence, it is imperative that as responsible adults, we enable them to protect themselves. How are we ever going to achieve it if we do not educate them about sexuality?
My own experience has made me realise that most of us lack the skills and confidence to converse about sexuality, gender and life skills with children and young people with developmental disorders. We may intend to, but we lack the language and confidence to engage with them.
Then there are fears and myths regarding what will happen if we start talking about sex with young people who have Developmental Disorders. “They need not know about it”, “they will not be able to control the urges if we talk to them about it” are the two most common feedback responses we got when our team held focus group discussions in the community. And, there is history too. Till not very long ago, our society practised and condoned Eugenics. Labelled as “imbeciles, feeble-minded and deformed” most people with disabilities were denied their right to love and sexual expression. In his magnificent book, The Gene: An Intimate History, Siddhartha Mukherjee gives a harrowing account of the misdeeds of the medical community colluding with authoritarian regimes to suppress sexual expression. This blight on our history has been corrected but we are still a long way away from establishing equity in terms of rights and justice in many domains of the lives of people with disabilities.
Parents and significant adults in the lives of the Neelams of the world have been programmed to see age-appropriate sexual behaviour through the very narrow lens of “problems and disorders”. Their engagement of professionals like myself is mostly restricted to seeking to curb in the Neelams what is natural and joyous.
What was Neelam’s error? She did what many of us as adolescents (I dare say at the risk of being censured!) have routinely done but her lack of guile led her to do it in a way, where she was found out.
So what is in my wish list for change?
- Clear away the cobwebs of myths and taboos regarding sexuality and disability – there’s no need for any ballyhoo around it.
- We have to accept that children and young people with ‘invisible disability’ are more prone to all forms of abuse, including sexual abuse. Hence we must converse with them about safety.
- Sexual expression, experiencing love, and physical intimacy are part and parcel of ALL lives. We cannot deny some people this and have their lives be less complete. Rather, we can accept this reality and engage in the process of enabling them to experience a fuller life.
- Finally, do not judge and do try to understand Neelam and other people like her. Cover Image: Pixabay