From the website of The Star of Malaysia:
Sex and learning disabilities
By PANG HIN YUE
Educating persons with learning disabilities about their sexuality from young is as essential as teaching them ABCs.
SEX is a topic that guarantees animated debate, what more when it is discussed within the context of people with learning disabilities. That includes people with Down Syndrome, autism and other types of developmental delays. With such diversity and varying degrees of cognitive functioning, challenges are plenty.
It is a slippery slope when differences in belief systems, values and cultures are thrown in the mix as well. Take, for example, the issue of masturbation. Whether in the West or East, views on such a touchy topic remain deeply divided.
When argued from a liberal and equal rights perspective, it is viewed as a socially acceptable behaviour done in privacy. As such, it should not be excluded from people with disabilities. In fact, if one were to Google “sex education for people with learning disabilities”, modules complete with illustrations are available. But for others, in keeping their faith, it is a no-go zone since the very act is forbidden.
So naturally it created a buzz recently within the community working for and living with people with learning disabilities when a talk entitled Sexuality, Disability And The Young Person With Autism was held in Petaling Jaya, Selangor.
Organised by the Vocational Training Centre under the aegis of the Selangor-based Archdiocesan Office for Human Development, over 60 parents and teachers tackled the issue head-on, acknowledging that sex is a subject not to be swept under the carpet and they should not pretend that their charges are angelic and asexual.
That they are intellectually challenged does not mean physically, they are wired differently. “They have sexual urges and needs just like anyone else,” asserts speaker Dr Russell Shuttleworth, a senior lecturer from the Faculty of Health Science of Deakin University, Australia.
As such, he says, lessons on sexual awareness, the difference between private and public boundaries, and understanding the bodily changes that come with the onset of puberty, have to be taught. They are just as pertinent as learning ABCs for people with learning disabilities, he stresses.
“They need to learn about their bodies, the appropriate names of their body parts, and their functions and sexual hygiene,” adds Dr Shuttleworth, who had previously worked as a support staff member with the disabled community in San Francisco in the United States.
To prepare persons with learning disabilities about their growing bodies and to safeguard them against sexual abuse and inappropriate behaviour in the public sphere, he advises caregivers to teach their charges five years ahead of their developmental phases.
Calling it a “Five-Year Rule”, he says at preschool through primary school levels, lessons should include the differences in male and female bodily functions, appropriate versus inappropriate touching as well as an introduction to puberty. For the female students, it is vital to teach them about menstrual care.
“We should employ the same teaching methods used for modifying behaviour and improving cognitive skills to sex education,” notes Dr Shuttleworth, who has degrees in anthropology and social work.
Forget the birds and the bees when labelling sexual organs. Be concrete, he says. Equally fundamental is to be consistent and repetitive about sexual safety.
For practical reasons it is best to get someone of the same gender to teach the basics of safety and hygiene.
Another area which needs to be vigorously and equally emphasised is the proper etiquette for the use of public toilets.
All this is to ensure that when they reach puberty (a word derived from Latin meaning “age of maturity”), they are better prepared to cope with their hormonally-charged bodies. Generally, puberty occurs between the ages of 10 and 12 for girls, and 12-13 for boys.
Besides an increase in weight and height as well as the growth of pubic hair, puberty for both genders can be an emotional roller-coaster time with the maturing of their reproductive organs.
For the female, it is about ovulation and menstruation while for the male, it is about spontaneous erections and wet dreams. The latter can be potentially embarrassing especially when it occurs in public places.
In a three-year study conducted by the Centre for Disability Studies at the University of Leeds in Britain, researchers found that although there is greater social integration, the learning disabled still lack basic sex education, leaving them embarrassed, vulnerable and confused.
As such, Dr Shuttleworth reiterates that persons with learning disabilities must be taught about their bodies and how to manage the changes and the ensuing sexual urges that come with adulthood.
He urges parents and caregivers of the learning disabled persons to take a clinical approach in dealing with sexual issues. He believes that the learning disabled must be given an outlet to express themselves sexually without courting trouble with the law while preventing sexual abuse. He terms it as “sexual facilitation” and considers Denmark a country well ahead of others in terms of providing avenues to gratify the sexual needs of the disabled.
However, he concedes that fulfilling the sexual needs of the learning disabled remains a grey area even in developed nations. In general, while most parents heartily agree that it’s important to raise awareness among their children about their sexual organs in order for them to care for themselves in personal hygiene and safety, helping them to be sexually fulfilled is another matter altogether. A general concern for most parents is their children’s vulnerability to the danger of sexual abuse and unwanted pregnancies.
Sexual freedom or not, the challenge remains in teaching people with learning disabilities how to draw a line between what is acceptable behaviour in public and what is considered private. For instance, if an adolescent is caught touching himself publicly, sensible teachers and caregivers should redirect him to physical activities that keep his hands occupied or let him have a time-out in his own privacy, away from other students.
Other areas of concern are understanding the differences in friendships, dating and sexual relationships within the context of family values.
Although many participants concede there is no one-size-fits-all solution to the multi-dimensional issues on sex and learning disabilities, they agree that the way to go is pragmatism tempered with common sense.