Birds, bees and special needs

March 29, 2008


In an age when sex and relationships permeate the mass media, the sexuality of the intellectually disabled remains defiantly off-limits for anything like a polite discussion. But a Nelson company has set out to break down some of the taboos that linger. Geoff Collett reports. --------------------
Sometimes subtlety is not an option.
Consider, for example, trying to teach some of the social graces and mores that most of us take for granted, to those who find them formidable hurdles - say, knowing to wipe your backside properly after going to the toilet, or not to play with your private parts in public.
That is one instance where delicacy has to go out the window.
The people behind a small Nelson company can attest to that. They can also attest that it is not an area where many others have gone willingly. Throw sex into the picture, and you might expect more timid souls to run a mile.
For we are talking here about what might be described as one of the last taboos: the intellectually disabled, and how to confront their needs of the flesh.
"Society generally has a lot of difficulty even seeing people with intellectual disabilities as having any sort of sexuality, " observes Annette Milligan, the high-profile Nelson health promoter and educator who is one of the trio involved in the company in question, Health Click.
Milligan doesn't strike you as one to back down from the need to confront such taboos in her field of expertise. So when, three years ago, a friend told her about the shortage of simple, tailored information to help teach intellectually disabled youngsters about basic human needs and urges, she started to dwell.
She got her partners in Health Click - George Mackenzie, who brings a teaching background, and Tony Lilleby, who adds the IT and multi- media skills - on side and now they have unveiled their attempt to fill the apparent void.
They believe they have hit the mark: a CD-Rom guide called Me, to help young people with mild- to-medium intellectual disabilities (such as Down syndrome and autism) understand some of the mysteries of human relationships, including the part played by their own bodies.
If it sounds simple - and indeed, keeping the message as simple as possible is the essence - the project proved anything but straightforward.
The trio suspect the complexity involved helps to explain why nobody has apparently tackled anything similar.
"If you have a child with an intellectual disability, you really have to teach them everything, very specifically and very deliberately, " Milligan says.
Abstract notions and intellectual disabilities aren't a ready mix.
"It's often very difficult for people with disabilities to get concepts such as the boundaries between strangers, acquaintances, friends and very close friends."
Society's instinct to avoid or deny the existence of sexuality and relationship desires within the intellectually disabled community has a tragic consequence. It leaves the members of that community vulnerable to abuse - far more than other people, according to research cited within intellectual disability support circles.
But if equipping them with the knowledge and words to reject unwanted overtures was an important part of the project, there quickly emerged much, much more.
As Milligan took the company's thoughts to various disability support organisations, the suggestions and pleas came thick and fast.
First, they were told that if they were going to explain the simple rules of successful relationships, they had to get people to grasp the importance of hygiene and showering - a fairly fundamental, if basic, component, as Mackenzie and Milligan can now see.
They went to a second group. Their first question: was toilet hygiene - namely, wiping your bum properly - on their list?
"The more we consulted, the more people said, 'Could you do this, could you do that', " Milligan says.
Menstruation, contraception, genitalia, appropriate behaviour around others - they all emerged as other essential topics.
It became clear that, while resources to deal with such niceties weren't non-existent, there was a hunger for a modern, comprehensive and easy- to-use approach.
Teaching methods were often developed in isolation, at times inconsistent and confusing.
Some of the resource material was ancient. Some of it hadn't kept up with developments in thinking about how to best teach the intellectually disabled.
"The need, " says Milligan, "is colossal. And it's extremely humbling and quite moving to hear the stories of people who are working with people with intellectual disabilities and the struggles that they face to teach even very basic things."
It also became obvious that not everything being demanded of Health Click's project could be accommodated - exploring and explaining same- sex relationships is one example Mackenzie cites.
They were cautious not to push boundaries too hard - in fact, they say, as bald as the message contained within Me has to be, it will be pretty tame stuff to any parent or caregiver familiar with raising a special-needs teenager. But they remain amazed at how little existed to address such questions.
Their own preconceptions took a hammering. The development of the project was painstaking - consulting the intellectual disability support sector, honing the requests and suggestions, writing them, turning them into computer-friendly formats, ensuring those formats could be understood and used by the target market (with very plain, simple, easily followed graphics), then taking them back to the communities, with further fine-tuning, further refining . . .
The trio learned one thing fast: "Any subtlety that we had, we just had to get rid of straight away, " Mackenzie says.
Milligan recalls how they came up with what they thought was quite a neat sequence on toilet hygiene. But a woman who works with people with autism saw the clip and pronounced: "My people won't get this. You have to show poos coming out of the bottom."
So, after a bit more brainstorming, Me features a short and more graphic sequence on toilet hygiene, along with entirely no-frills advice on how to wipe properly.
There may be no room for lavatory humour here, but Milligan and Mackenzie can see the droll side of what they went through.
One day, for example, "we said to our graphics guy, 'We now need someone masturbating in public' ", Mackenzie recalls.
As the team had grasped by then, there is no polite or subtle way of clearly and simply making the point, to those who have previously not understood it, that masturbating in public is not good form.
They say the reaction to those consulted during the production of Me was overwhelming. Word has spread far and wide.
The final version is still a week or two away from its commercial release but Health Click has been receiving orders since November. Emails of encouragement, endorsement and inquiry have been arriving daily.
It is, Mackenzie says, the sort of response any product developer dreams of.
They have modified aspects of the CD-Rom for overseas release and will introduce it at a couple of upcoming international conferences.
Whether that interest translates into commercial success remains to be seen, but they are optimistic, already contemplating how future versions might be updated and what other needs and opportunities exist for producing similar resources for the intellectual disability support sector.
As Milligan points out, she has worked on plenty of start-up projects in the past, and has never seen such a positive response as Me has generated.
"The need is bordering on the desperate for those families."