This week, two boys with autism were found naked, locked in a room. There are thousands like them.

This post deals with disability violence and might be triggering for some readers.

WHEN I was a little girl, I collected butterflies.

I hated it. The idea that you could take something that was free, snatch it from the air, put it in a killing jar and watch until it stopped struggling – that was an awful, awful idea.

But my father thought it would be good for me, a disabled child, to hone my fine motor skills. And so I learned.

WATCH: Vanessa Cranfield on parenting a child with a disability. Post continues below.

Firstly, you need to kill the butterfly without harming its wings. You place it in a killing jar with cotton wool and ether. Then there’s the pinning out, drying, classifying.

Only it’s not a butterfly by then – it’s a specimen. The minute it entered that jar, it stopped being a butterfly.

As an adult, I’m still collecting. I collect, sort, classify, catalogue. But this is a pastime that is even grimmer than butterfly collecting – I collect stories of violence, abuse and neglect against disabled people.

***

Australians were appalled when a number of stories about neglect and abuse against disabled people came to light over the past few weeks. Admittedly, the stories were horrifying.

There was the story of Ann-Marie Smith, a 54 year old woman who was left to starve to death in a cane chair that was also used as her toilet.

We heard about four year old Willow Dunn, whose father has been charged with her murder after her tiny body was found, starved, in her cot.

And just a few days ago, the story of two teens with autism whose father died outside his home – the boys were found naked, starved and locked in a faeces smeared room in Queensland.

Australia was appalled. But disabled Australians and their families weren’t surprised – this is our reality. In this country, the line between being okay and not being okay is perilously thin for disabled people.

Like most parents of children with autism, I’m aware that the gaps in the disability service system look more like gaping chasms. It’s why we lobbied for a Disability Royal Commission.

Violence, neglect and abuse are rife in the disability service sector and domestic and family violence is common.

This is our normal. And it’s not okay.

***

I collect the stories of our dead and wounded from newspapers, Coroners reports, word of mouth from other disabled people and parents. I handle them like treasures, those stories, with the care that others did not take while the subjects were alive.

I classify them, turn them over and over in my mind until I understand what is different, what is the same.

There are always patterns.

Ann-Marie Smith. The nation was rocked by her death, but it wasn’t as unusual as you’d think. Some things are different, some are the same.

Ann-Marie was isolated. There’s been one photograph – today, at Parliament House in South Australia, it was propped up on a cane chair, like the one she’d died in.

Her neighbours hadn’t seen her outside, they said, for years. They didn’t knock on her door or check how she was.

Willow’s neighbours said the same. Some didn’t know a little girl lived there, others said that she hadn’t been seen outside for a fortnight.

The people who contacted the authorities, the people who didn’t. The police checks, the previous complaints. The oversight mechanisms and the community safeguards that should have worked, but didn’t. The failure of people to care.

***

I don’t have to look up the names any more to know who suffered the same fate, where the patterns fit together.

Kyla Puhle starved to death in a beanbag at home. She weighed 12 kilos when they found her. She was 27.

55 year old David Harris, whose decomposed body was found in his kitchen, mail piled at his door. The NDIS, which was supposed to be a lifeline, failed him badly.

‘Ebony’, aged seven. She had autism, died of starvation. Nobody acted on the many notifications to child welfare.

Jason Dawes, aged ten, suffocated.

16 year old Peter Eitzen, stabbed.

Richard Mann, tied to a chair and drugged before he choked at Oakden, an aged and mental health facility closed down after serious cases of neglect.

Listen to The Quicky: How was Ann-Marie Smith left to die in squalor? Post continues below. 

Shirley Thompson, neglected. Stuart Lambert, crushed. Janet Mackodzi, frozen. Little Martin and Elisa Lutz, gassed by their father as they slept in their beds.

There are not dozens of them. There are thousands of them. It haunts me to think of the ones I do not know about.

The killing jars look different. A house, a shed, a sea container, an institution. But really, they’re all the same.

Put a butterfly in that jar and it struggles for a while, wings wildly flapping. Add some isolation, some loneliness – why, you know what it’s like, don’t you? You’ve been locked down in a pandemic.

That is what the lives of many disabled people look like, every day.

***

Nobody thinks about this kind of abuse as family and domestic violence, but of course it is.

Disability violence IS complicated. There are complicated disability and mainstream service systems, oversight mechanisms and funding arrangements which can all contribute to a person’s death.

It’s why violence against us is treated differently – when there’s no one clear perpetrator, our murders are reduced to ‘administrative error’ or ‘system failure’.

There are systems that are supposed to protect us. Sometimes they even work well.

The biggest issue is not the type of system – it’s that we’re trapped in the first place. Trapped by segregation, isolation, by friends or neighbours not stopping by.

Disabled people don’t need rights given to us. We have them already, because we’re human, just like you.

We need them upheld, to be free from torture, neglect and abuse. To live with the people we choose in the places we want, with the support we need to live a good life.

It shouldn’t be hard – and yet Ann-Marie and Willow are dead, the explicit details of their deaths pinned to every news media outlet.

People failed them, not just one system or person. We failed them as a community, trapping them in prisons that were not of their own making, failing to keep them safe.

Somewhere along the track, Australia lost sight of its own humanity. The last three months has showed us that we desperately need to connect and help each other in order to thrive.

***

I’ve collected these stories for too long. I’m tired. We don’t collect butterflies either any more, it’s gone the way of cock fighting and fox hunting. I want us to be safe, for the violence to stop. For us to be free.

It’s time for us to stop collecting the stories of our dead and celebrating the richness of our lives.

If this post brings up any issues for you, or if you just feel like you need to speak to someone, please call 1800 RESPECT (1800 737 732) – the national sexual assault, domestic and family violence counselling service. It doesn’t matter where you live, they will take your call and, if need be, refer you to a service closer to home.

Samantha Connor is a human and disability rights activist. You can follow her on Twitter right here.

Feature image: Supplied.