after struggling for so many years to live, I do not now want to die

It is frightening how quickly medical staff can push you through the system when they want to; and sometimes it is hard to know how much of this is dictated by actual urgency, or the presentation you bring to the appointment.

Mine was calm with the specialist yesterday. Calm but worried, I suppose. I am.

I had a CT in the afternoon, luckily enough, with contrast. The dye they inject into you to light you up like Crimmus - and see everything inside. It is a bit amazing, I think, that we have the technology to do this. Science is mind-blowing.

A CT scan of a brain. Not my brain.

Though of course, laying inside the CT machine listening to it hum, I thought about Disability rights (because I always am) and how many Disabled people were likely experimented on, killed, went through pain and excruciating suffering without their free consent to develop tools like these. Even if not this, then something else.

Moreover, how many Disabled First Nations people. Jewish children. It’s a lot to think about and I often feel frozen trying to understand the ethics of it all (and I am not sure anyone can). Every one of those children, those people, had a name and a life they wanted to live. Every one of them looked at the world around them, at some point, in wonder.

Experimentation and Article 15 of the UNCRPD are on my mind significantly at the moment. Myself and my colleague Heidi La Paglia from The ANPA met with Human Rights Commissioners from the AHRC this week including Rosemary Kayess, Anne Hollonds and Katie Kiss, as well as the President of the AHRC - Rosalind Croucher - and senior Directors of the Disability rights team. We discussed Inklings and PACT Therapy and our strong concerns for children from our community.

We talked with them about the risks of harm to young children reliant on the adults around them to make good decisions, good ethical decisions animated by a love of rights - not of normalisation, money, or pathologising concerns.

Is this what excites the hearts of researchers, media managers and government workers pushing this program forth into the world?

Really?

I doubt it. I do not think they love our community’s children the way we do. I do not think they understand where their research sits in the history of those children’s community; I do not think they grasp the deep lineage those babies are born to.

(Exist. Learn who you are, little ones. We will show you where you come from. You belong to a world that wants you, just as you are.)

Autistic identity is real, as is Autistic culture, joy, belonging, and a shared history of struggle; and attempts to suppress and control, and engineer that - should be fought hard. With bared teeth. It is really barely in the world, our power - only decades old.

We cannot let it be taken from our children. Not by anyone. Not even if it saves them money.

(Resist. Fight for who you are, and know we will fight for you. Who you are is poetry and reason in a world overtaken by deception, and greed. Know you can fight with whatever tools you have to hand. Never let anyone tell you that you are powerless, little ones.)

It is the breach of Article 15 rights by Inklings and PACT Therapy that frightens me, and how little objection is being raised to this clear and present breach by many in government, and also in advocacy.

Article 15 of the UNCRPD states that Disabled people have the right to not be subjected to medical or scientific experimentation without their free consent.

Do we matter so little, are we such a burden, that you can walk across this line with confidence and think that nobody will stop you?

Let us be clear: This is exactly what Inklings, in particular, is. It has been declared as such by the self-described experimental researchers, repeatedly. The pilot program set to roll-out in South Australia is a data-gathering exercise; as was the one in Western Australia.

Whitehouse is gathering data with the express purpose of supporting a specific hypothesis. One that is a danger to our community and everyone in it regardless of support needs.

What does the research underpinning Inklings hypothesise?

The hypothesis trying to be proved by Whitehouse et.al, is that profound Autism is a category that exists (it doesn’t) and that we need a clinical pathway and a separate cultural identity (we don’t) and that clinicians have the right to play with our lives and access to resources in this way (they don’t. Please see: the UNCRPD).

Clinicians do not have the right to re-define Autistic identity, nor to put us into neat little boxes to meet budget requirements. Not under any circumstances, do they have this right. Our lives belong to us.

I think that government have seriously misjudged how far past the tipping point we are now, in terms of the progress of rights. While of course there is huge work to do, the greatest problem of government now is that Autistic people, Neurodivergent people, are everywhere and we are increasingly educated on our rights as a people.

We are in government. We are in schools. We are in advocacy. We are in the budgets, we are in cabinet, we are in the media, we are everywhere and adult and awake to the real threats to our existence. We are your nurse, we are your pathologist, we are your cardiac doctor. You may not want to alienate us too much; just sayin’.

We also vote. And we are excellent at building power. And we number far more than you realised.

Two things I cannot stop thinking about

As I lay in the CT scanning machine, feeling the metallic tang of the contrast dye flow through my taste buds, and the warmth of it spread across my middle and thighs, I thought of two things:

1. How I had been able to consent to this procedure.

The 1300 babies suggested to be enrolled in this ‘therapy’ for their ‘social and communication differences’ in South Australia will not be able to give free, prior and informed consent via their parents. Unlike me, they will be giving consent for their children without being informed of risks of harm, or that this is experimental research.

Forget all the banging on about “decades of research”. That is rot. This is a program based on, worldwide, research with 180 babies, max. It is not proven research and so many weasel words are being passed around at the moment.

It may well be the strongest research of it’s kind but this is because most researchers are sensible enough not to experiment on babies without free, prior and informed consent. The lack of research intervening with such small children to change how they naturally communicate and socially interact should tell us something crucial about how appropriate this is to do.

Is it ground-breaking - or dangerous?

I knew my risks walking into the scan. There is a small risk of harm to me from irradiation. There are small risks of harm to me from the use of contrast dye. There is a risk with every needle puncture. I was informed and I chose to climb onto the bed anyway.

Because I want to live. If there is cancer, I want to know, as soon as possible. I have an 8 year old child. I do not want to die.

In Western Australia, we know that parents have not been informed, in many cases, that the program's objective is to target and reduce social and communication differences in these possibly Autistic babies by teaching parents how to play with them in neurotypical ways - and model typical interactions.

And they have observed that, in a very short term way, this works to some extent, in making these babies seem less Autistic on the outside. This is lauded as a good thing.

It is not a good thing. Making any Autistic person seem less Autistic is a risk to that Autistic person. Masking is and always will be a risk of harm to us, and a highly unreasonable one.

New families are still being referred to the program in WA. We know they are not being told that concerns are being raised about the program; and that risk and safety issues have been flagged for the kids referred in. The risks of both masking and being cut off from support via the NDIS due to dropping below the diagnostic threshold for Autism.

We know they’re not being told, because they have contacted us and told us this. We know the therapists delivering the program also don’t know this because they’ve told their clients, who have told us.

Risks to children from masking and a lack of support include suicide, self-harm, substance misuse and dependence in the future. Hospitalisation, incarceration. Poverty, being in long-term domestic violence; complex mental health challenges that persist. Social isolation, and reduced inclusion in employment.

But hey, as long as we save a buck and get re-elected as budget heroes, right?

Ugh.

2. That as much as I have struggled for so long just to live, I now do not want to die. And I want this feeling for every Autistic child.

For so much of my life, I wanted to leave it. I hated myself; and I engaged in a lot of self-destruction, as well as experiencing a lot of harm because I was AuDhd.

I hurt myself, a lot. I spent time in the hospital. I have been subjected to enormous amounts of physical, emotional, and psychological violence. I have been broke for much of my life; I have been through the child protection system twice based on prejudice as a parent and was exonerated each time (mandatory reporters need to get it together).

Unfortunately, I have seen my child be subjected to this too in care settings, despite being only 8 years old. The world for us is a rough place to be. I mourn and fight that in my work; moving as fast as I can, with all I have, to make it better.

Yet there is so much joy to be had in occupying your life. To stand on your patch, and claim your time on the earth. To proudly say: I am here. I am Disabled. I own my life. And I will be loud about it -

This is joy.

In the ways that we live in the world, we should be proud. Disability Pride gives me life; it is the air in my lungs; it expands and contracts them. It is the love I give my child when I try to support him in the ways he needs to be supported (and I do this imperfectly, but I am trying).

It is the love I give to my friends when we talk in private about the tricky parts of our lives, but also the specific delights of how we see, hear, think and process; ways nobody else can touch who does not also experience our lens. I do not want to be non-Autistic. I want to be me, in an accessible world, with support.

It is the love I have for my community; the reason I work with whatever energy left over after parenting my kid. It is lightning in my fingers as I type this. Disability justice is a very pure love.

Even though for so much of my life, I wanted to die, diagnosis, support and access to the community have made me want to live.

I hope I continue to. I have so much more “fuss” to make - as Judy Heumann would put it. My car is named after her (Judith). I did not learn to drive until this year, because of the impact of a lack of support for my Disabilities. But this year I learned, thanks to access to the NDIS.

There is much to live for. There are a lot of people I plan to annoy, to argue with and to face down until they do the right thing. I have no time for cancer. But if it makes time for me, I will fight it too. It may find me fierce. As we say back home - see how we go, eh?

One thing I know is this: as long as there is breath in this body, I will not stop asking for the basic rights of Disabled people to be recognised. And as they did with 504 - bloody well implemented. If we need to sit in, we will sit in. We will write, we will yell, we will organise.

Until it is real and in our hands. And more importantly:

In the hands of our children.