Access to meaningful work and a decent income is a basic human right, but instead we are forced to live on the margins, writes Liz Hall-Downs – our abilities underestimated, our rights ignored, and even our honesty questioned.
According to the social model of disability, what disables us is not our physical conditions, but a society that ONLY caters to people without those conditions. Traditionally, industrial laws and practices have favoured people who can work a 40 hour week, every week, with that work completed between particular set hours. Those who require more flexibility are often overlooked, even though they can get the job done perfectly well – just not in the usual 9-5 fashion.
When our conditions fluctuate, as mine does, we don’t easily fit into the available boxes (‘disabled’ or ‘not disabled’). I go through periods of being unable to do much of anything, and other times when I can be quite productive – but my last full-time job was in 1983. The commonly held notion that disability renders one ‘useless’ with ‘nothing to offer’ has severely impacted my career prospects, financial security, employability, relationships, social status and self-esteem over a lifetime.
At 20, I was diagnosed with Rheumatoid Arthritis. By 23 this painful and progressively debilitating disease had damaged so many joints in my hands and feet that I was functionally disabled. I cannot walk far, nor stand for long, and repetitive hand movements like typing cause flares which can lead to further joint deformity. I was accepted onto the Disability Support Pension (DSP), which affords me a small, but reliable, income.
When my disease was diagnosed, I was partway through Registered Nurse training, but soon became too functionally impaired to complete it. I had a way with words and I was thrilled to be offered a place in a highly competitive Bachelor of Arts degree in writing and literature. I hoped it would help me transition to less physically demanding employment and, perhaps, a successful career.
It took me ten years to complete the degree. Ever-changing government policies about the DSP didn’t help. At one point, a conservative government insisted ‘if you can study full-time you can work full-time’ (never mind that full-time study required just 15 hours of attendance a week, vastly different from spending 40 hours on my feet as a nurse). I had to study part-time to continue receiving income support.
Later, a Labor government decided that people with disability should be encouraged to study. They gave me an extra $30/week and I changed back to full-time, but then my disease flared. I became very ill, hospitalised for a couple of weeks, and required strong pain medication that affected my ability to think. I dropped out of study.
Third time lucky, I eventually managed to graduate thanks to a few lecturers who believed in my potential and pulled strings to let me try again, and a college counsellor who went above and beyond to help me when I was homeless and barely able to afford the required textbooks.
All this time, there was no support for me to find employment. As a disability pensioner, I wasn’t eligible for many employment services. I was still young and wanted to work, to build a career and escape the grinding poverty of life on benefits. With proper supports I could have been earning a living, paying taxes and having a relatively normal life. Frustrated, I once marched into Centrelink and demanded they help me get a job. They sent me to an interview with a provider who sourced intellectually disabled people to work for embarrassingly low wages in a sheltered workshop.
Over the years, I’ve managed to self-generate freelance work (writing, editing, teaching, music, and community arts projects), but the welfare system is depressingly punitive, making it impossible to earn significant money without affecting my pension. It’s been a terrible juggling act, balancing my desire to work with the system’s desire to kick me off the pension if I do – which would deprive me of basic income support when I’m unwell and the health care card that makes my very expensive medications affordable. I often joke that the only real benefit of all my years studying and amassing qualifications is that I have learned the skills to jump through the welfare system’s endless, and endlessly changing, hoops.
‘The System’ operates as if people with disability have nothing to offer and don’t want to work. It’s insulting, depressing and wasteful. We are a large chunk of the population, and access to meaningful work and a decent income is a basic human right. We still have bills to pay, and we want to participate. Instead we are forced to live on the margins – our abilities underestimated, our rights ignored, and even our honesty questioned, while ‘the rules’ are continually tweaked by governments for their own political and economic purposes.
I was Dux of my school, I have worked very hard to obtain Bachelor’s and Master’s degrees, and I have published a number of books. I’m also a singer and performer. Now that I’m getting close to pension age, I look back and feel my abilities and potential have been largely wasted. Even with a Master’s degree, there has consistently been no expectation that I would have anything to offer as an employee. The focus has always been on my disability, not my actual abilities.
Progress in this area has been glacial. So many in our community continue to watch too much of life from the sidelines. Many younger people currently going through what I did in my twenties can’t get approved for disability payments at all unless their condition is ‘stabilised’ and unchanging. They are being impoverished, forced to apply for endless jobs they have little hope of getting, and treated as lazy malingerers trying to rort the system. We need to squarely confront and legislate against Ableism – and not just in the workforce, but everywhere – for anything to really change.
Liz Hall-Downs was very active in Australian poetry circles during the 1980s and 90s, and worked in community arts in schools, prisons and the community. After publishing her last poetry collection, ‘My Arthritic Heart’, she resumed writing prose and developed a musical project with her partner (a roots/blues/alt-country duo, ‘Swampfish’). Liz’s interests are: writing, performance, music, environment, gender, ‘Crip Activism’ and parrots. You can find more about Liz and her work at http://www.lizhalldowns.com.
This piece was originally published by PWDA (People With Disabilities Australia)’s website in November 2021 at the following link:
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