Don’t let opportunity pass
There must be a way of providing support without taking power away from disabled people, writes
Iwas institutionalised for long periods throughout my childhood and into my early adulthood. Professionals advised my family that I could not live at home because of family stress caused by my impairment.
A medical model of disability dominated in our society and even nowadays it still dominates. In those days, professionals and doctors were treated like ‘gods’ and most people went with their recommendations. My parents were no different.
My parents thought they were doing what was best for me but instead, I was physically, sexually and emotionally abused at these places.
Last month I gave evidence at an Abuse in Care Royal Commission of Inquiry’s public hearing about my experience.
I told commissioners that being in care was like prison with no bars. That I was constantly terrified. That being ‘‘cared’’ for in these places was all about power and control; the institutions had all the power and controlled everything we did, not that we were able to do much.
I remember when I had a short stint at Pukeora Hospital in Hawke’s Bay. It was like sending someone to prison at 11 years old.
Then I was put into long-term institutionalisation at Burwood Hospital in Christchurch. I had no choice in anything to do with my day-to-day life – what time I went to bed, what I ate, when I washed.
I finally managed to leave Burwood Hospital at 21. I had to fight to leave.
However, it was not the end of my struggles.
When I got out of care, I promised myself that no-one would ever control me again.
But it is hard work to constantly be fighting back. It takes a big toll on you emotionally.
It is essential that we learn from history. But it is not just historical; disabled people still experience higher rates of violence than non-disabled people, both in care and in society.
It took me a long time to realise what had happened to me in care was not okay. The abuse continues to impact me, including my relationships today.
The abuse and neglect endured by disabled people, including myself, is a result of systemic issues.
Ahierarchical system leads to abuse of power. There must be a way of providing support without taking power away from disabled people. Disabled people need to be able to make decisions and have a say and understand all the options fully when it comes to our support.
Frequently, my impairment is undermined by others, and often I fight against ableist systems. I get screwed over – by systems, by individuals. I am treated like a second-class citizen on most days. On the buses, at the shops and on occasions at work. We as a society devalue people like me and set up ableist systems.
I have to draw on strength and hold on to my sense of self.
We must change the way we think about support and the way we provide support as a country, or nothing will change.
Yes, I wanted to share my experience with the royal commission, but I am worried that their findings and recommendations will sit in another discarded report, getting dusty on the shelf of power.
If you watched the evidence given by us, the survivors, to the commission, then you can see how much this takes out of people. Do not let this be in vain.
I urge the Government not to let the experiences of thousands of survivors of abuse in care sit on their shelf.
Do not cast us away to be forgotten, neglected, and abused again.
Address the systems that we have now that devalue and disadvantage disabled people.
Be brave in designing systems that prevent the hierarchical, the disempowerment and the dehumanising practices in the system that put disabled people in danger.