We are pleased to finally be able to bring you this audio entry in our community member guest blog post series Our Voice, in time for the Disability Royal Commission hearing on abuse of people with disability in public spaces.
Lady Barbarella K is a GLBTIQ 78er and disability rights advocate, former revolutionary and identifies as bisexual and gender diverse. They have lived experiences of trauma and neurodivergency.
They are a film maker, journalist and currently writing their memoir, “My Tainted Life”. This podcast, written in late 2021, is about their heroes and heroines, existing in public as a person with disability, and addressing systemic injustice.
I begin by acknowledging the Traditional Custodians of the land on which I do this podcast, the Gadigal country of the Eora nation. This land was never ceded. I also wish to acknowledge the bisexual, queer, trans, indigenous gay, lesbian revolutionaries who fought for justice and the rights of GLBTIQ people today.
At his Australian of the Year acceptance speech, Dylan Alcott got a gleaming smile from Tameless Tame, despite her resting bitch face standing next to Scomo, not backing down on issues of sexual assault and trauma, and I watched as Tame started to grin, and tears of joys welled in her eyes, as she passed the baton on to Dylan for Australian of the Year. I felt hope for the future, despite having an unbelievably bad day.
Dylan said, “My advice is to you, non-disabled people. It’s time for you to challenge your unconscious biases, leave your negative perceptions at the door and lift your expectation of what you think people with disability can do. Because it’s always more than you think.”
And I thought, is my bad day just a bad day? Because all the things that Dylan joked about in his speech really nailed the reason for my bad day. And what could we do to create better days ahead? That’s what this podcast is all about.
The Royal Commission created a trauma-informed and supportive environment to talk about trauma and injustice. I really appreciated it, but then I went back to the real world, and reality bit hard. I wondered if that experience would have any impact on the discrimination that I deal with every day, and others do too.
As we all know, the world is a far harsher place post Covid-19. Although most people speak kindly of people with disability, and stars and celebs like Dylan Allcott are made Australian of the year – that’s fantastic – many people still bully us, and the unemployment rate has not budged in 30 years. Can the Disability Royal Commission change the way non-disabled people think and act? Maybe, but while the system makes it easy for non-disabled people to kick us while we’re down, while the system lacks balls, bullies will know they can get away with it. And that’s a sad thing.
Let me tell you about my bad day.
Picture this: I’m in a bank, one of the big four banks. I’m wearing visually enhanced glasses with a polaroid block, that look like normal sunglasses, a bit rockstar, a hat with diamante patterns – kind of blue denim, I picked it up at the op shop to help block the light from the LED and neon lighting that triggers my neurological conditions and gives me migraines. I’m also wearing two masks, being hyper-vigilant to help prevent the spread of Covid-19.
At the counter, I hand over my ID and ask to withdraw the hefty sum of $19. $20 is the minimum to withdraw from the ATMs and I only have $19.49. I am told that I need to remove my mask, my glasses, and my hat to be identified. It’s the height of Omicron, in an area that’s been on the news for being a hot spot. I politely say that I live with disability, and I suggest alternatives to removing my mask. She just keeps saying “Remove your glasses, remove your hat, remove your mask.”
I say no. It escalates.
Three women with security badges suddenly surround me. I panic. I fear I will be thrown to the ground and handcuffed as is standard police/security practice. I’ve seen that happen a lot. I feel threatened, my heart beats fast. I just blank out. I throw my hat on the ground and then my glasses fall and then I remove my mask for a few seconds and mumble about my disabilities. They just stare at me and then they accuse me of being aggro.
I say: “Can I get my $19.00? I’ve done what you said.”
I realise my disability glasses are on the ground and go to pick them up and sciatica pain shoots down.
The security people are joined by more people with badges and uniforms.
They make humiliating comments as I struggle to pick up my hat and glasses. I ask for help. They say they will call the cops.
I ask them if they are aware of disability discrimination and one of them glares, the others just smirk.
They ask me to leave the bank. I haven’t got my $19. I decide that’s the easiest option, the path of least resistance. One of them says I will be reported for my behaviour. I say, “What, talking about disability discrimination?”
Another bank workers waves at me as I leave and says “have a lovely day.”
I ring the complaints line and speak to a well-trained, polite customer service officer with an empathetic voice, who notes my experience. And that’s that.
This is typical of the way me and others are discriminated against daily – on buses, in supermarkets, at universities and at home. People think there are two types of disabled people – nice and nasty. Feisty and friendly. I suppose I’m a bit feisty. They decide which you are based on their own preconceptions about disability.
Let me tell you about some bad days other disabled people I know have had recently.
Disclaimer: My examples have been creatively enhanced to protect identities.
A friend suffering with rheumatoid arthritis pain encountered victim-blaming: “What did you do to bring this on?”
A friend was in a supermarket, looking for gluten free beer. Suffers from inflammatory bowel disease. Supermarket employee said, “You don’t look like a disabled person,” and “If you are disabled you wouldn’t be drinking beer.” Then accused them of shoplifting and searched their bags while other customers watched.
I’m not one of those people who believe in the inherent good in all people. But nor do I believe that people are bad. There’s some beautiful people out there. The system and laws and people in authority need to change after the DRC. It’s not enough just to examine history. We must move forward to make sure it’s not repeated. Even though it’s traumatic to talk of bad days, we all hope that this lived experience will be used to improve resources and laws.
When I gave evidence to the Royal Commission, I felt very supported, even though I was asked to speak about some very harrowing material. The formula is simple, but so few understand. I was asked what worked for me. I was made to feel in control of the process. They asked what I would like to talk about and where my boundaries were. They respected those boundaries. Questioning a traumatised person in detail can trigger more trauma. An open and flexible approach is more trauma-informed. The triggering areas were dealt with in the same way that you drive around an oil spill, with care and ready to put the brakes on and with a backup team for support.
It made me feel for a moment that trauma-informed practice was possible everywhere. Maybe with enough resources we could educate everyone and make telling our stories a positive experience in every context.
If more people asked the non-disabled to do their share of the work, like Alcott did, it wouldn’t be on the disabled person to do the exhausting job of complaining or requesting adjustments time and time again. If the system was less litigious and more pro-active, if you got an advocate the moment you made a complaint, then we might see real change, meaning better days and more freedom, more energy for people with disability.
Battling the current system, I feel like I’m pushing an elephant upstairs some days, to quote REM. And the elephant to boot is lawyered up and quotes disability policy back to you, how virtuous it is, while you’re sweating from the elephant’s weight, and then it poops on you. This is how the system feels to me. I do love elephants, though.
Dylan jokes he is standing on the shoulders of giants in the disability sector, although of course he’s in a wheelchair. I laugh uncomfortably as I know disabled people need resilience in spades just to get through the day, as well as the patience of a saint and the attitude of a street fighter. Just to persevere and get up in the morning is sometimes the best you can do. Sometimes even to brush your hair is an effort.
But Dylan’s right. Disabled people have achieved a lot. And we do appreciate some inspiration.
He says, “My purpose is changing perceptions so people with disability, people like me can get out there and live the lives that they deserve to live.”
Thank you, Dylan, and good luck. But changing perceptions may not be enough. We need active support, because bullies instinctively attack vulnerability. Bullies are in government, at work, on the street. When you must jump through hoops to get on NDIS, a ring of fire to simply get on a bus that’s poorly designed, you don’t get support at work, this tells us the system is broken. But improving it is a simple formula. The more systemic support we get, the less we get bullied and the better our days will get. And the more out and proud and productive people with disability are. And that employment rate can go up and the future looks rosy, even in light-blocking polaroid glasses.