Scar tissue

[Content note: descriptions of violence, stalking, abuse.]

Psoriasis is a curious disease. One of its many glorious features is the ability to reproduce old wounds, over and over again.

There’s a psoriatic patch on the inside of my right forearm in the shape of a burn I got in a kitchen two decades ago. There’s a psoriatic stripe on my finger from a ring I used to wear. There’s a psoriatic pattern on my back in the shape of a long ago sunburn.

This Koebner’s phenomenon, as it’s known, isn’t just limited to the skin. Injuries to bones and tendons are also sites for future psoriatic arthritis. The broken fingers, those foot bones, the damage to my back.

Psoriasis is the healing aspect of the body gone awry. My skin continues to heal itself long after the initial break; my bones do the same. Old wounds manifest themselves time and again, as if to always remind me of things I’d rather forget.

While some of these wounds were self inflicted, there are plenty that weren’t. My hands, thrown up to protect myself, remembered cuts and breaks and punches. My feet, oh god, my feet. I don’t want to remember that. And yet the rest of my body serves to remind me that those old wounds are still here.

Violence against women has been much in the spotlight lately; my story of violence is nothing new, but so it turns out, my body hasn’t forgotten.

I thought I had put all the violence behind me; that I wouldn’t remember that terror any more. I was wrong.

I fled a man who held a knife to my throat and threw me up against a wall. I fled a man who told me he’d kill me if I left, and that I could never hide from him. I fled, and I fled, and I fled. And he followed.

I lived in fear for many years, refusing to be photographed, or to be anyone in public. I excelled at the behind the scenes type gig, hiding my face and my name. I did the internet always under one pseudonym or another. Being online under my own name took a long time. When I was outed, it took a leap of faith to stay.

The old injuries I wear are remade into psoriatic sites of overactive immune system abundance, but also in the scars on my heart. That fear, that betrayal, that despair when love becomes violence is right here, still, all these years later.

My body remembers all the old injuries. But in that remembering, I am no longer afraid, even as I see the scars repeating over and over again on my skin, and in my bones.

I lived in fear for a long time. I hid and ran and left behind that terror – but the scars remain.

But I have to learnt to live with the scar tissue. To live with my fear. To watch the remains of that terror on my body and know that I am brave. Have hope.

Posted in personal

Don’t mess with the NDIS

Reports of a threat to the NDIS appeared last night, with Laura Tingle reporting fights in the federal government about the details of the full roll out.

The so-called Expenditure Review Committee is worried about the NDIS with “the nascent scheme a constant source of angst within the cash-strapped government.” Tingle mentioned that “the complexity of the scheme meant that ERC ministers have to constantly go back and refresh their minds about the genesis of the scheme.”

The genesis of the scheme – what was that again? Oh yes, I remember. That would have been the Shut Out report, then the Productivity Commission hearings and report, and the Every Australian Counts campaign. The reports that so many people poured their heart and soul into. The ones that said that the NDIS was needed to stop a blow out in support costs, and to restore some basic rights and dignity to disabled Australians. Yes, that genesis.

And complexity? The NDIS is a market-driven system, where individuals are able to buy the supports they need in a competitive environment. Now, if that’s not right up a Coalition government’s alley, I don’t know what is. But just in case, here’s an explainer I prepared for the Treasurer earlier.

I know some politicians have had slightly dodgy memories of late, but forgetting their own commitments to the NDIS, or their own speeches in Parliament, or god forbid, their own election promises seems to be a bit of a stretch.

The August deadline for finalising the NDIS has been well known for months, with a myriad of groups anxiously awaiting the details so they can get started on planning for change. I know the Government is constantly lamenting the danger of ‘uncertainty’ for business, but what about for disabled people?

Because that’s the truth of it – the NDIS isn’t an abstract, costly, complicated idea for disabled people. It represents hope and the dream of real change. The NDIS contains so many promises that finally there might be enough; enough support, enough equipment, enough opportunities for a better life.

People around the country have been working on this in good faith – trying to trust that this was really going to come true, become a reality. This kind of report just says that all the good will, all the round tables, all the innovation, all the fucking work over the last few years is just treated as though it is nothing. As though everyone who worked so hard is nothing. As though the right to an independent, dignified life is nothing.

This has to stop. The NDIS is not some frightening cost explosion appearing on the horizon. Go back and read the Productivity Commission reports that map out what happens if the NDIS is not implemented. The NDIS is not welfare – disabled people have the right to go to work, get out of bed and have a fucking shower without having to beg for it, or be subjected to some kind of pity party.

And, as Tingle says, any changes to the NDIS “would raise howls of protest from the politically sensitive disability community.” Ha, you bloody bet it would. Because any changes would be a betrayal of disabled people and all the work that has gone into making sure that basic rights for disabled people are recognised.

The government barely has the political capitol to keep going at the moment, let alone weather this shit storm. That they could even consider taking on the NDIS says a great deal of how little they understand what it means to disabled people, or how hard people are willing to fight for it.

Posted in disability, economics | Tagged , , | 1 Comment