5 min read

Being heard

Dandilion head with dried seeds floating into the distance, with a blurred orange sky in the background
the air is full of seeds - Andy Jackson

The end and the beginning of the Royal Commission

Sitting on the train as it wound through the still charred forest from the 2019 fires, on the way home from the final Disability Royal Commission hearing, I played the speeches from the Commissioners over and over in my mind.

Powerful words about the lives and pains of disabled people, delivered with the solemnity they deserved, from some. Weirdly inappropriate jokes and omissions from others. A new poem from Andy Jackson, delivered to a crowded ballroom quietly holding its breath. Video montages of disabled people talking about the worst things that had ever happened to them. Soft sobbing, hands being held, arms around each other.

Andy’s poem has these lines that brought me undone - the air is full of seeds, he said softly, with force.

We belong to an ancient lineage of resistance prophesy.
We have always been speaking even in our speechlessness.
We remind you of the earth we are all born from and to which we can only return.
Here in this awkward, sacred stillness open your mouth, ears, hands.
The air is full of seeds.

These story seeds, sown by so many disabled people through the life of this Royal Commission, now floating in the air, waiting to find fertile soil. This grand old institutional reckoning that we have invested so much hope into to bring us relief from harm, from hurt.

It has been a long four and a half years, a longer campaign to get the Commission, and decades of work before that from disabled people, families and allies to ensure that the violence against us was seen. All that time and effort by disabled people trying to have our voices heard. Has it all been worth it? I guess we are about to find out when the final report lands this Friday.

The campaign to get the Disability Royal Commission had the taglines of ‘shine a light’ and ‘open the doors’. Much of the work to get the Royal Commission was about getting a tiny understanding of the scale of violence and abuse against disabled people. And that it was actual violence.

In the 2015 Senate inquiry into violence against disabled people in institutional settings, disabled people and families reported appalling abuse and violence, brushed aside as workplace incidents, or health and safety matters. Never actual crimes, never anything that needed to be stopped, never anything caused by perpetrators or systems.

The inquiry report is tough reading, but necessary. The Senators found that:

the evidence presented from people with disability, their families and advocates, showed that a root cause of violence, abuse and neglect of people with disability begins with the de-valuing of people with disability. This de-valuing permeates the attitudes of individual disability workers, service delivery organisations and most disturbingly, government systems designed to protect the rights of individuals.

Indeed.

They recommended a Royal Commission, and we all campaigned for four years to get one because only a Royal Commission had the powers to kick down the doors, to dig out the secrets, to look at all the systems, and to bring us justice. At least, that was the theory.

It feels strange to now be at the end of this now, just waiting to see if all that work, from so so many disabled people, families, advocates and organisations, was worth it. To see if the recommendations do those story seeds justice.

Something that has struck me over the last four years has been the silence around the Royal Commission, the lack of engagement with the stories and the utterly appalling treatment of disabled people talked about at the public hearings. The Chair called out the media for mostly ignoring the Royal Commission at the final hearing, with the notable exception of the ABC and the Guardian.

I have had a job around media for much of the last ten years, and have taken some ghastly calls from those who barely recognised that we existed, let alone had the right to speak about the violence we knew.

I had journalists asking for family members to speak, ‘because our audience won’t want to hear from someone like that’ meaning a disabled person. I had others ask for disabled people ‘who had really bad shit happen and could talk about it on camera in the next hour’. I had journalists say that ‘disabled people belong in those places’ and that ‘shit happens’ about violence in segregated settings like group homes. I won’t list some of the more appalling ableist, racist and dehumanising requests I received.

Of course, there were also journalists, particularly from the ABC and the Guardian, who treated disabled people with enormous respect and care, and were trusted to tell the stories that have powered this Royal Commission. Their reporting has been so vital to disabled people and families, and will be in the months to come. But the neglect, the omission, the outright ignoring from the rest of the media has been galling.

It wasn’t just the media of course. Politicians and governments also mostly ignored this Royal Commission, barely ever mentioning it in Parliaments or in public statements, again, with a few notable exceptions. Most disability service providers approached the Commission with apprehension and anger, refusing to change or take responsibility for the harms they had caused. Wider civil society ignored the Commission altogether.

In spite of all this ignoring, disabled people over the last four and a half years have used social media to fill the void, to talk about the stories we were hearing, and to give the context for them. Live tweeting in particular became a way of sharing our grief and anger, while amplifying the words being spoken for the wider community. As always, it is disabled people who do the work to get change.

Being a survivor of violence, abuse, neglect and exploitation, and working on and around this Commission, has been an exercise in both affirmation and trauma. At the final hearing, many of us heard our own stories echoed in the creative submissions adorning the walls, and in the words of the speakers.

At the same time, all this has made the past few years incredibly hard for so many disabled people, myself included. The national forgetting of us during COVID just added to this pain.

So many of us are survivors exactly for the reasons that the Royal Commission has heard about. We’ve been separated from the community, shut away. The legal violence of the state has been used against us. We have been discriminated against, kept in poverty, by attitudes that harm us. We’ve been hurt, so much and by so many, including by those meant to care and support us.

Why is this? Disabled people are not valued. We are not seen as equal to you, or that we have the right to belong in your world. All too often, you think we belong over there, in that disabled place, where you don’t have to think about us, or wonder what is happening to us.

Of course, you are wrong, but the Royal Commission final report will lay bare the consequences of your refusal to see us as fully human, to ignore the hurt and harm done to us, and to pretend that nothing needs to change.

At the final hearing, I held the hands of disabled people I love. I got and gave hugs of solace and grief as we gathered to be witness to the end of a process that everyone had poured their souls into.

Every word in every volume of the Disability Royal Commission’s final report, to be released on Friday, is written in the pain and tears of disabled people. And every word, every seed, deserves to be heard, to be listened to, to be acted upon.

From Andy’s poem again:

This time let your discomfort mean something.
This cannot be the end of listening but it’s beginning.
So, we might be able to rest, breathe, nourished on this broken luminous path we make as we walk forward.
Or crawl.
Or wheel or leap forward.
Weary and determined.
Carried and carrying each other.