Matthew Whiting, who has spastic quadriplegia with a speech impediment, is Canterbury’s Regional Disability Leadership Coordinator and Services Manager for CCS Disability Action. He testified last month at the public hearing of the Royal Commission into Abuse in Care focused on institutional care for the disabled, deaf and mentally ill.

OPINION: I was institutionalized for long periods throughout my childhood and early adulthood.

Professionals informed my family that I could not live at home due to family stress caused by my disability. A medical model of disability dominated our society and still dominates today. At that time, professionals and doctors were treated like “gods” and most people followed 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 in these places.

Last month, I gave evidence at a public hearing of the Royal Commission into Child Care Abuse about my experience.

READ MORE:
* ‘National disgrace’: Care survivor abuse failed by state, probe finds
* Abuse in care: Disabled survivors placed in care as ‘containment of society’, survey finds
* Survivors Call for New Government Entity to Hear Allegations of Institutional Child Abuse
* The unnoticed epidemic of violence and abuse against people with disabilities
* People with Disabilities Report Higher Rates of Sexual and Physical Violence, New Study Finds
* ‘A lot of abuse took place there’: state care institutions disappeared from records

I told the commissioners that being taken care of was like a prison without bars. That I was constantly terrified. That being “cared for” in these places was about power and control; institutions had all the power and controlled everything we did, not that we could do much.

I remember when I had a short stay at Pukeora Hospital in Hawke’s Bay. It was like sending someone to prison at 11 years old.

Then I was institutionalized long-term at Burwood Hospital in Christchurch. I didn’t have a choice about anything in my day-to-day life – what time I went to bed, what I ate, when I washed.

I finally made it out of Burwood Hospital at 21. I had to fight to leave.

However, that was not the end of my struggles.

When I came out of care, I promised myself that no one would ever control me again.

But it’s hard work to constantly fight. It weighs heavily on you emotionally.

It is essential that we learn from history. But it’s not just historical; people with disabilities continue to experience higher rates of violence than people without disabilities, both in care settings and in society.

It took me a long time to realize that what had happened to me during the treatment was wrong. The abuse continues to affect me, including my relationships today.

The abuse and neglect experienced by people with disabilities, myself included, is the result of systemic issues.

A hierarchical system leads to the abuse of power. There must be a way to provide support without disempowering people with disabilities. People with disabilities need to be able to make decisions, have a say and fully understand all support options.

Often my impairment is undermined by others, and often I struggle with ableist systems. I get tricked – by systems, by individuals. I am treated like a second class citizen almost every day. On buses, in shops and occasionally at work. As a society, we devalue people like me and set up ableist systems.

I have to tap into my strengths and cling to my sense of myself.

We need to change the way we think about support and the way we provide support as a country, otherwise nothing will change.

Yes, I wanted to share my experience with the royal commissionbut I fear that their conclusions and recommendations will remain in another abandoned report, becoming dusty on the shelf of power.

If you have watched the testimonies of us, the survivors, testifying before the commission, then you can see how much this is costing people.

Do not leave this in vain.

I urge the government not to let the experiences of thousands of survivors of abuse in care settings sit on the shelf.

Let us not cast ourselves off to be forgotten, neglected and abused again.

Address the systems we have now that devalue and disadvantage people with disabilities. Be courageous in designing systems that prevent hierarchy, disempowerment and dehumanizing practices in the system that put people with disabilities at risk.