My sometimes job is a project called the Disability Clothesline. It's an idea I nicked from NZ - a simple arts project where people with disability create a 'story' on a teeshirt, and where our 'laundry' is hung out for everyone to see. The idea is to end the silence around violence and abuse against people with disability. You can read about it here.
The other part of the project is a Facebook page, where stories about violence and abuse and neglect are routinely collected, shared and discussed. It's a gruelling task. I trawl through the Coroner's inquests and drag stories of systemic neglect and abuse into the daylight. A three or four hour stint can leave me blinking, horrified at the black-and-white accounts of murders and abuses that almost never make the news headlines. Why would they? After all, it was only a person with a disability.
Story after story, horror painted upon horror.
Murders by parents and deaths from institutional neglect are painted as administrative errors or acts of mercy - the very worst are those where there is a combination of a failure to cope, a failure to care and a feeling that death - even starving your disabled daughter to death - is preferable to relinquishment.
I collect these stories, one by one, stuffing them into my killing jar, determining whether they are butterfly or moth, cataloguing them onto a spreadsheet. But it's only when they are spread out side by side that you can see the patterns - patterns of systemic failure, of abuses that should never have happened, of failures that are labelled 'avoidable' and 'unfortunate'.
Rowan's story stayed in my mind longer than the other broken butterflies - Rowan was only eighteen years old when he killed himself at a place called 'The Beach House'. If you have the belly for it, you can read his story here. I'll leave it to you to read about his anguished parents desperately trying to keep Rowan alive. Rowan had Asperger's Syndrome - with an IQ in the high ranges, he wasn't 'disabled' enough for the right kind of help. His mental health issues meant that he didn't fit neatly into a disability box, and his disability meant that he didn't fit neatly into a mental health box. The Coroner's Inquest sets it all out in black and white - Rowan's parents chasing him through traffic, preventing him from stabbing himself in the stomach. Trying over and over to admit him to hospital, not knowing that his patient file was clearly labelled 'no benefit can be gained through inpatient hospitalisation'. Trying desperately, once the first flurry of early intervention was over, to recover their boy, who had loved Egyptology and the Titanic. And Rowan's is only one of many, many others.
Here's the thing - the stories are all different, but they are all the same. People don't fit into neatly shaped boxes - if you try to hammer a square peg into a round hole, you're going to knock the corners off.
Rowan certainly had his corners knocked off. Tired of fighting, sick of trying to fit into a societal hole he just didn't think he measured up to, he hanged himself from a sock suspended from a door handle on 21 April 2006. We only know his story because he was detained pursuant to an order of the Guardianship Board - the other Rowans are buried silently, mourned only by their families, soon forgotten.
In disability services, we put great weight on a 'person-centred' approach, the most bastardised term of this decade. It's come to mean 'having a plan' or your own file in a dusty filing cabinet, rather than meaning an individualised approach. We don't take society's square pegs and carefully measure them up, much less craft an equally shaped system response that will allow for a good fit without permanent damage.
Rowan was put into care, where he would be 'safe'. He was 'placed' into a facility with another young man, who he didn't get along with; hammered into compliance with a series of badly designed service responses, carried out by poorly trained staff. On the day that Rowan died, his caregiver had turned off the alarm so he could sleep a little longer.
We need to forget our ideas of models, because there is no model. We need to rethink our approach to the idea of individualised approaches, because words mean nothing unless backed up by actions. And we need to keep the names of those who have fallen upon our lips in the same way we do our fallen soldiers - embedded in our memories, engraved somewhere else other than upon their tombstones, to remind to stop failing - and killing - people with disability.
An Incident Report, written by Rowan Wheaton to staff members at the Beach House, 17 March 2006, a month before his death -
Friday, late afternoon and early evening we were figuring out what to have for dinner. We decided to have a meat and vegetable pie. Alex decided he was going to cook the pie still concealed in its box. I told Alex that he couldn't cook it that way and he wouldn't listen. I kept telling Alex that it wasn't safe but he refused to take it out. So I took the box out of the microwave and I tried to open the box and take the pie out. Alex grabbed the box and tried to take it from me, kept telling me to let go of the box. I kept telling him that it wasn't safe but Alex wouldn't listen. I saw on TV a show called Brainiack, on the show they did an experiment that showed a can of baked beans being put as it is without opening it and the microwave being turned on for a couple of minutes. The microwave blew up, spraying lots of baked beans everywhere. Veronica stood in and said "both of you go to your rooms". Alex stamped of to his room, but I refused to go to my room. I tried to explain to Veronica that what Alex was doing was against his own safety and that I was trying to prove that I was right, but Veronica wouldn't listen. She kept to telling me that I wouldn't appreciated it if Alex tried to tell me what to do and that I couldn't tell Alex what to do either. I pointed out to her that wasn't the point, but she still wouldn't listen. I was really pissed off, and livid, and frustrated because I wasn't being listened to, Alex could have blown himself up (and microwave) or set the house on fire. Knowing that I wouldn't be listened to by Veronica, s he didn't even ask what was going on by the way, I wanted to get the pressure off my back, so I turned around and ran out of the house. I knew Veronica would call the Police, but I didn't care. After walking endlessly along the beach for a few minutes, I decided to turn around and go back. After I got back to the house and had dinner, Veronica called the Police and told them that I had returned.
On Sunday in the late afternoon, Veronica had a discussion with me. She told me she wanted an apology and explained that I was wrong and that I grabbed the box from Alex and said that I considered myself to be right all the time. I was absolutely livid. I couldn't believe what I was hearing, so I started raising my voice, and as Veronica kept at her point less explanation, I started shouting, and calling her swear words. So I turned around and ran out of the house, Veronica called the Police again, and when I got back Veronica told me that she rang the Police and asked them to come and have a talk with me.
The Police told me that it was not only Southern Junction Community Services (SJCS) policy that I was not allowed to shout and swear at staff but also that it was law not to shout and swear at anybody. I knew it was pointless trying to get through to anybody. So I went to bed without dinner, Veronica removed the TV and the hired videos from the TV room as punishment for speaking to her inappropriately. I knew no one would listen apart form my parents. I thought it was ironic that such a person would ever punish everyone instead of asking what had happen and trying to work out who the culprit was, she did not care.
I want you to do something about this little issue that has grown to a bigger more complex situation. If you agree with me, if you understand I would like you to make it rule that if such a situation ever arises again that the staff not punish both but ask what happened and judge who is incorrect. I would also like you to, if it is not too much trouble, talk to Veronica about the situation, although I wouldn't mind having a discussion with you first just to get my side of the story. I suggest you tell Veronica to judge us evenly next time rather than punish us first.
Yours sincerely, Rowan Wheaton.