Case study: behaviour and support

In Weeks 1 and 3, we discussed how ideas of what is “normal” can limit people with disabilities. Like other ideas about what is “normal”, ideas around normal behaviour are also socially constructed.

One easy way to recognise how our behaviours are “normalised” is to think about all of the things you do when you’re at home, relaxed and no one is watching, that you would not do in public — such as lying down horizontally.

In the above video, Shooshi discusses how challenging it was for her son Bodhi — and for her as a mother — when Bodhi would behave in certain ways. Sometimes, Bodhi’s behaviour was only challenging because it challenged social norms. In other words, it was of concern to others. But other times, Bodhi’s behaviour was his main form of communication. So for example, when things were difficult and frustrating for him, he would act in violent or aggressive ways to try to make his meaning understood.

Shooshi’s background is linguistics — the study of communication. With this in mind, Shooshi and her partner Mark spent a lot of time trying to understand and frame all Bodhi’s behaviour as communication. Shooshi realised that when Bodhi would act in ways that were viewed as challenging or disruptive, there were often very real reasons for this.

For example, Bodhi was in a computer class and was engaged in putting a CD in and out of the CD drive, until another student came and took the CD away from him. Bodhi became increasingly distressed after this injustice. He made loud and repeated sounds while standing behind the offending person’s chair and holding onto it, in an attempt to communicate his distress. The teacher, however, had not seen what had happened and got angry at Bodhi for the distraction he was causing.

Shooshi argues that another approach would have been to connect or bond with Bodhi over his communication — even if it was initially difficult to understand his meaning. So the teacher might have said, “Oh, Bodhi, you seem distressed. Something has upset you.”

In the video, Shooshi mentions a number of ways of managing behaviour. Firstly, she talks about behaviour support and behaviour analysis. Behaviour support can be provided by a specialist practitioner who investigates ways of supporting an individual, as well as their family and supporters, so that they are not at risk to themselves or others. There is no prescriptive way of doing behaviour support; instead, as we discussed in the last step, it is a person-centred approach that examines each person’s environment, relationships, service interactions and health and support needs. A behaviour support practitioner, having observed and analysed the person with behaviours of concern in their context, will provide a plan and ongoing support, training and adjustments to implement this plan. As Shooshi mentions, this is an ideal scenario and does not happen often — though when it does, it can have a life-changing impact.

Shooshi also mentions restrictive practices. Restrictive practices are any type of support or practice that limits the rights or freedom of movement of a person with disability. Restrictive practices include:

• seclusion — isolating the person;
• chemical — using medicine to control a person’s behaviour;
• mechanical — using a device to restrain or make it harder for a person to physically move or control their behaviour;
• physical — when support people use their hands or body to stop or lessen the person’s ability to move when they are upset or when a challenging behaviour is happening;
• environmental — restricting what someone can access in their daily life;
• psycho-social — when support people try to control what the person can do (often through punishment).

• when there is proof that everything else has been tried first;
• when the behaviour might harm the person or others;
• for the shortest time possible;
• if the person has given permission to use the practice, or if approval has been given by the person’s guardian;
• when service providers have thought about how it might affect the rights of the person;
• if the practice is written in a Behaviour Support Plan;
• if it is properly documented in writing and followed up regularly.

Talking points

• Think of all the different ways you communicate that do not include speech.
• Try to tell someone what you did last weekend without using language. How do you feel when you can’t say what you want to?
• In what situations might someone want to use restrictive practices?
• Have you been in any situations where restrictive practices were used? How did the person who was being restricted respond?
• If you work with people with complex communication needs, how do they communicate? How do they tell people things? Ask for things? Communicate their feelings? Do they have communication resources that work for them?

In the next step we explore support around sex and intimacy.