Let's talk about behaviour, @DRC_AU. In a way that anyone can understand.

All humans have 'behaviours'. You're talking about 'challenging behaviours'. But - challenging to who?

These tweets contain info about child sexual abuse, so CW. #DisabilityRoyalCommission

2/ All behaviour is a form of communication. Babies cry when they are hungry or wet or in pain from colic. It's a sign that you're upset, that things are not right. There is always a reason for any form of 'behaviour'.You might act out your feelings or needs. We are no different.

3/ We might do something so that someone stops doing something. Or to get their attention. Or to satisfy a sensory need. Or because we are hungry or sad or angry or bored or hurt or tired. Sometimes we don't feel safe or we feel out of control so we do whatever we CAN control.

4/ That is especially the case if you have no personal power. If you have very limited power over anything in your life then believe me you are going to control the shit out of ANYTHING you can. Why would you not?

You need to understand this.

5/ Then think about this in a context of abuse. I'll use my personal CSA circumstance because I am autistic and hey it seems we need to tell our stories over and over in order to be heard. Although we thought we would be doing that at a Royal Commission.

6/ If you are being raped often, it is a good idea not to wash or be clean. That means that you are less likely to be raped. They will write this down in your notes as 'poor hygiene'. What is worse, having no friends because you smell or being raped? Or being written up? Common.

7/ If you 'act out', then you are treated differently. That means you get to leave the classroom and not have to deal with that any more. Or you go to detention a lot and you don't have to go home for lots of hours til your mum is home. These are challenging behaviours.

8/ A good way to get detention or get out of the classroom or activity is to throw a chair or punch someone in the face. Whatever happens, it is a lesser thing than what the alternative will be.

If you have a cognitive disability, you can still do this.

9/ There are things that trauma do to you - they make you think that people are dangerous. PTSD is a real thing. 'Just lashed out, no provocation,' they will say. But you try coming up behind someone with hypervigiliance with your loud voice and your happy tap on the shoulder.

10/ These are challenging behaviours. They are challenging to you, because you do not know what we are communicating or responding to.

Do you see?

And then there is 'environment'. Let's talk about Stephen. He is dead now. His mum talked about this publicly.

11/ Stephen had Prader Willi so obesity and problems breathing. He needed a sleep apnoea machine or he might die. But he would take it off during the night. The agency did the 'right' thing, put together a plan for managing that restrictive practice.

12/ Only Stephen was too big for the elbow splints that his mum had said yes to. So because the plan just gave permission for a restraint, they tied him to the bed by his wrists. Every night.

When his mum found out she went ballistic.

13/ But when everyone had a closer look, it turned out that Stephen was being put to bed at 5.30 at night. Not enough staff and no awake staff shifts, you see. He was the most 'compliant' and so he was just put in bed before everyone else was. By 2am he was bored shitless.

14/ So he was dismantling his CPAP machine out of boredom. Why would you not? Forty year old guy in bed for that many hours.

And they TIED HIM TO THE BED.

You should not be talking about these plans. You should be talking about why these plans are put in place.

15/ I am just going to call it. This is an inquiry into violence, abuse, neglect and exploitation. I know people have an understanding that there are 'experts' and that we are just people to have things done to us. But don't you see, that is wrong. The 'experts' don't know stuff.

16/ The 'experts' keep talking about the data and the disabled people cannot even get to the Royal Commission because they are not guaranteed safety. I have heard this at least thirty or forty times from different people. Why are we not guaranteed safety, or supported?

17/ Why are we not setting the agenda? Why are you not talking to us? Maybe, just maybe, you could ask disabled people what we need to be talking about. Maybe you could be having hearings JUST with disabled people and their families. Radical notion, I know.

18/ Data and academics have a place in this. But it is not in the witness booth. We need to hear the stories and the people you consider experts need to be providing context, additional information, identifying data gaps. And they need to actually know about us - not in 'theory'.

19/ Dear @DRC_AU, we fought for this Royal Commission. We consider it to be ours. Please make sure that it truly reflects what we need it to, that it includes us and that you are taking on board the concept 'nothing about us without us'.

Thank you. <3