By Elena Filipczyk
I wrote this article on my phone, in bed, with bleeding hands and bandages covering my body. Lightheaded and in pain, I’ve spent all day lying down, yet I’ve also been studying and working. I can’t help but think this self-destructive “work ethic” is exactly what the government wants from Australia’s disabled and chronically ill community. We’re reminded of it every day.
This month, the Albanese government announced it has signed a memorandum of understanding with the Business Council of Australia to implement a disability employment pilot scheme. According to the government, the $3.3 million agreement will result in the Business Council and the Department of Social Services working to link disabled people with employers.
The fact the government made a deal regarding disability employment with the Business Council of Australia says it all in my opinion: disabled people, like me, are only good for the economic value we’re capable of producing. Sadly, this is the kind of capitalistic rhetoric disabled and chronically ill people are used to hearing, even from those people who are supposed to advocate for our needs.
According to the government, there are 2.1 million Australians of working age with a disability, with 53% in work and 10.3% officially unemployed. This compares to the broader community which has an employment rate of 84% and an unemployment rate of 4.6%
While there are many disabled people who want employment but can’t get it, the reality is that many disabled and chronically ill stay employed beyond their physical and mental capabilities because they have no other options. This is especially true for women with disabilities, given that many of us also have to carry the burden of unpaid labour, including care work, why is there so much pressure to increase our paid work?
I only got through five years of university because I could do the majority of my coursework lying down in bed. I didn’t know what was wrong with me at the time, but I was too poor to afford specialist doctors’ appointments to find out. After I graduated, my first “real” job was a 9-to-5. Though I was hopeful I’d get the hang of what seemed to come so naturally to everyone else, my body and brain never adjusted to a full-time office job and a 4-hour daily commute. I spent my evenings and entire weekends sleeping, too exhausted to socialise or even look after myself properly.
Masking my autism in the workplace also led to frequent breakdowns on public transport and in the staff bathroom, and the stress of it all led to intense flares of my chronic illnesses. As much as I needed to be at home taking care of myself, I had no sick days left, my workplace didn’t allow office workers to work from home, and going part-time wasn’t an option if I wanted to afford both rent and my medical appointments. Of course, as many people facing disabling chronic illnesses will know first-hand, I also didn’t qualify for the NDIS (National Disability Insurance Scheme) or the disability pension. And I’m not alone – despite women making up half the disability population in Australia, just a third of us are NDIS recipients.
Three years and several diagnoses later, I now know exactly why I can’t sit or stand for long periods of time, but my capacity to hold even a “sedentary” job hasn’t improved. But as a single woman with no parents, I know I have no choice but to work full-time. I also know most workplaces are not accessible, safe, or comfortable environments for disabled and chronically ill people.
This painful, exhausting, and sometimes undignified reality of being an over-employed disabled person is why I’m horrified the Albanese government wants to push the 250,000 disabled Australians who they estimate are “job-ready” into the new Business Council disability employment scheme.
Disabled and chronically ill people like me don’t need another failed Disability Employment Service. We don’t need another third-party program that will push us to our limits physically, emotionally, and financially. What we need is a government that listens to us, a more accessible NDIS, and a disability pension that considers our differing and variable needs.
Elena Wewer is an autistic writer and activist. She writes about autism, disability, chronic illness, and animals. She has ADHD, POTS and lived experience with several physical and mental illnesses.
Twitter and Instagram:
@elenafilipczyk