Reporting disability on IDPwD

It’s International Day of People with Disability on Thursday, so expect a flood of stories about inspirational people doing amazing things and getting awards.

There’s nothing wrong with being recognised for achievements, or publishing a positive story – the problem lies with that being the only type of coverage that ever appears on IDPwD.

I know, it’s meant to be a day about positivity, but why? The theme of this year’s IDPwD is Inclusion matters: access and empowerment for people of all abilities and includes some key areas:

  • Making cities inclusive and accessible for all
  • Improving disability data and statistics
  • Including persons with invisible disabilities in society and development.

What would stories look like if they were actually about these kind of themes? Would they continue to be the kind of saccharine, boring coverage of a morning tea somewhere? I don’t think so.

Making cities inclusive and accessible for all

How about getting a group of people with disabilities to map and talk about what would actually make a city inclusive and accessible? Use all the tools now available online – GoPro cameras, social media, mapping, smart phones – to make sure that the city can be seen from every angle, to record reactions, to mark the blockages, to see from many viewpoints.

Or have a look at universal design and why it is still voluntary? Why don’t we have mandatory rules for making our homes available to everyone? Continuing to build homes that aren’t accessible isn’t just a problem for the people who can’t find a place to live – even if they do, they may not be able to visit friends and families.

What about community living and closing institutions? The recent Senate inquiry into abuse and violence had such a strong recommendation about closing large institutions, and for people with disability to be able to choose who they live with, just like everyone else. One of the many reasons why this is a good idea is that when people with disability live in the community, go to the local shops, swim in the pool, hang out at the park, there are many eyes that can see abuse and neglect.

Improving disability data and statistics

I know, how on earth do you do a story on data and statistics? How about looking at where the gaps are in data collection and having a think about why? Again, the Senate inquiry pointed out that missing data was really about who counts, who matters. If data on violence doesn’t include people with disability, then how can there be a response to that violence? As Dr Jess Cadwallader says:

“So what does this mean for accountability? Well, thus far, it means that the Australian Government, and the state and territory Governments, don’t recognise violence against people with disability as an urgent issue. Without solid data, it becomes very difficult to argue that these forms of violence, which are often occurring far away from community oversight, concealed within specialist institutions.”

Statistics and data are also vital to understanding what’s going on with both employment and the social safety net. Why isn’t the rate of employment for people with disabilities getting any better? What are the real barriers? Should we introduce quotas? Or what about the whole disability employment system? What’s happening with the current review? Who’s being consulted and how? What’s the end goal? Surely there’s more to it than this kind of tosh.

And what about the constant framing of people with disability as a burden – that providing a very basic level of income will make the country bankrupt. None of the actual statistics (Facebook link) on the rate of the disability support pension support these kinds of arguments, and in the meantime, make it harder for disabled people to survive. Yes, let’s talk about Newstart, that cruelly small amount of money that people are expected to live off if they are shut out of the employment system because they have a disability. [Note: I think the low rate of Newstart is terrible for everyone, but having a disability is expensive.]

Including persons with invisible disabilities in society and development

This goes to the heart of some of the stereotypes about disability. Just look at the stories about people being harassed, having their tyres slashed and being abused for using disabled parking spaces. The idea that there are large numbers of people abusing accessibility features is both wrong, and also supports the idea that accessibility is only for a few. One in five people in Australia have a disability, and more will become disabled at some time in their life. Accessibility works for those who break their foot playing soccer one weekend, the person who has just had a baby and for older people who find stairs a bit hard going.

This also means pushing back on the idea of designing a world that suits only one kind of body, when what that actually means is the exclusion of all other types of bodies. Accessibility isn’t a ‘special feature’ – it means and says that everyone is welcome.

So how about a few of these kind of stories on IDPwD as well as the usual ones? Why not dig just a bit deeper and explore more of the issues and themes about disability? I dare you.

Posted in disability | Tagged , ,

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