Some weeks ago, I was asked if it would be okay for Julia Gillard to quote me in a speech. I said yes, and she described me as ‘erudite and charismatic’ and quoted from my video with the SA Mental Health Commission about Mental health in the workplace, in this speech to the Diversity Council of Australia. Which is pretty awesome.

Julia is the Chair of the Board of Directors for Beyond Blue, and they were pretty keen on the message too. CEO Georgie Harman got in touch to share the video and invite me to speak on a panel at the Disability Employment Australia Conference #DEA2018. So today I trundled off to the Hilton to meet some new people.

There were some seriously awe inspiring folks there showing us what can be achieved with a disability. Which is inspiring and fantastic, if not intimidating. Conferences tend towards the shiny. So I did my thing and was vulnerable in public. I spoke about failure and shame. I told them I was possibly the least successful job hunter in the history of the world, and gave them a 5 minute run down on hundreds of job applications, rejections, sad experiences with DES providers, a microbusiness cert 3 for people with a disability where we were repeatedly told business is easy (spoiler alert, it’s not), NEIS, freelancing, jobs that evaporated after I applied, jobs that evaporated after I’d been successful at applying, training as a peer worker and still not being employed! It’s no bad thing to have someone speaking from failure. There’s so much you miss otherwise.

I was honest and passionate. It was hard. I thought TEDx was the most exposed I would ever feel in a talk but this was bizarre because it’s still something I’m wrestling with. It’s raw. Career has been my holy grail my whole life. I don’t come to a Disability Employment Service Provider for a job, I come for an identity! For a sense of purpose and meaning and connection. So I don’t have to be a bludger, a leaner, a long term unemployed, a hopeless case, a complex needs client, an underachiever, a dropout, a misfit, a failure anymore. I come because I don’t want to be poor for the rest of my life and I don’t want my children to be poor. I come because I’m so tired of pity and shame. I want to be a real person with a name tag and a business card and a place in the world.

So I talked about adversity and diversity and the complications of our lives where we don’t fit one box. Multiple intersections of difference and disadvantage, complex diagnosis, chronic pain, queer identity, homelessness.

We were asked how to motivate people to want to get help into work, and I said of course we want work – make it safer and make it more dignified. I talked about how essential work is but how risky too. Job hunting can put our financial safety nets at risk, can expose us to bullying and toxic workplace cultures, and can put more failure and rejection in front of us than our mental health can cope with. I also talked about how out of reach work can be during crisis, that often my personal definition of success is painfully simple – everyone I love is still alive at the end of the week.

I said that I’ve learned that I can’t successfully job search when I’m drowning in shame, terror, and rage. A bit like dating, I need to be okay with myself as I am. That means we all need to understand just because I don’t get paid, doesn’t mean I don’t work. People like me work a lot. We are often well suited to informal roles that fit around our disability. We run unpaid support groups on social media, we raise kids, volunteer at school, help out friends, care for family. We often create our lives in the gift economy, and transitioning to paid work is a very different culture. I shared how I’ve needed psychological support to help me see that having to make hard choices – like caring for a family member in crisis over finishing a degree, doesn’t mean I’ve failed.

I shared how many folks like me wind up freelancing so we can navigate our disability, and what a baptism of fire that is for many of us. I shared about the amazing Freelance Jungle and how essential that support has been to me. I talked about how changing my focus from what skills I want to use, over to what business model suits me best, fits around my limitations and causes the least stress has been far more helpful for me. Finding my own way of using skills that more closely mimics the informal work I do fits so much better than the rigid 9-5 model, or the huge, impossible to schedule projects that take years to finish and pay. It’s not about the skills, it’s about how the work is done and how well that fits. So I’ve moved away from project based work and back to gigs – short term, easy to schedule, and much less stressful for me. I mentioned that there’s a certain level of absurdity about funding an organisation to help me find work instead of just hiring me.

It was stressful, fun, exhilarating, exposing, and surreal. There were many interesting people to talk with, which I greatly enjoyed. My anxiety was pretty off the charts at times, but that’s the nature of that kind of personal work.

Georgie gave a fantastic talk about how we need to take care of our staff and our workforce too, to lead by example and prioritise mental health in the workplace. She was a strong advocate of the value and worth of people with lived experience. We both promoted the value of peer work in the disability employment context: that if you have never seen anyone do what you are trying to do, that is a very large gulf to bridge. People who share their experiences – the successes and failures – give us so much richness in figuring out our own paths.

So I hope I held a space for the human experience of disability and unemployment. There was a great deal of passion and sincerity from the people I spoke with. I was glad to be included.