Punch: If you think disability is bad, try full-time caring
This week The Punch features two Angry Cripples, both anonymous. It’s fair to say they have somewhat opposing points of view to say the least. We recommend reading this one first.
I am an angry cripple. No, I do not have a disability, but as the mother of a young woman with severe and multiple disabilities, I am as crippled by the cruel Australian disability support system as much as – and sometimes more than - many people with a disability themselves.
I have been the sole primary carer of my daughter since my divorce more than 20 years ago, with the result that - like hundreds of thousands of other sole primary carers - I subsist on the poverty line.
During the global financial crisis, when the government was throwing cash at families earning up to $110,000 a year and the widescreen TVs and handbags were rolling out shop doors, I looked at my life, my old and decrepit furniture, my second hand clothes and all the things about my health and life that desperately need work but which I have not been able to attend to because of lack of support services and/or my inability to pay.
After 20 years of devastating poverty, everything in my life is broken and falling apart.
I cuddled my beautiful, innocent daughter, who needs so much support, and I decided to kill myself. Simple really. A solution to a life totally limited, isolated and desperate with no hope in sight.
Then I realised I would have to take my daughter with me, because I could not leave her in the hands of uncaring governments and private service providers who prefer to hide the neglect and abuse of many in care rather than take on staff and their union bullies.
And I realised that no matter how hopeless my life, I was and am not yet ready to make that decision for my daughter. She has her difficulties, but she does not feel the same about her life as I do about mine.
I have spent my life trying to ensure that her life, although limited, is a good and happy one. But if nothing changes over the next five years, there will come a point where there will be no return for me. There is a point when the life I can offer my beautiful girl will become even more limited by my age and decades of poverty.
As the years pass, my choices will become more limited and my fear of the future can only grow greater, because unrelenting poverty, loss of hope and loss of my own humanity is becoming more and more overpowering.
Sitting here crying as I write this piece, I acknowledge and despair that I have changed so dramatically over the past three decades. I am consumed by desperation. I have turned from a vibrant, hopeful and joyful young woman into an embittered, frightened and desperate older woman fast approaching the latter stage of the ‘middle’ years. I am bereft. I am scared.
A few years ago, with my daughter funded to attend a post-school day program three days a week, I accepted the offer of a terrific part-time job, believing it could eventually lead to full-time work and a better life financially for both of us.
But I now know better - because more days working simply mean greater care costs for me. If I accepted the full-time job I was recently offered, I’d have to pay for an additional 34 hours of care for my daughter each fortnight, out of taxed income and on top of my current care costs.
In fact, if I didn’t work and just stayed at home on full Carers’ Payment, my net income would be nearly the same.
In addition, the travelling time to and from even my part-time job already takes me over Centrelink’s draconian 25-hour rule, meaning I am entitled to no Carers’ Payment to help cover extra care costs. (This rule holds that carers may spend no more than 25 hours a week in education, employment or volunteer work while receiving the miserly Carers’ Payment – including travel time. It’s irrelevant if the carer earns $300 per week or nothing at all; if they don’t provide the minimum 143 hours per week of care, they are not eligible for the poverty-line carer payment.)
We ‘carers’ - who it is worth stressing are in fact simply families - are the only people in this country who are expected to pay for and be responsible for adults for decades: financially, socially and personally. Every other relationship sees adults as separate identities whose costs are autonomous, except ours if the adult has a dependant disability.
I know some people with disability are enraged when family carers are allowed a voice in this space, insisting it should belong solely to them. But this is nonsense. Until people with severe disability are provided with the services they need, the debate must also be about the family members expected to provide what governments will not.
Lack of support for one means someone else has to give up their life, career and income to provide what government does not. How can families who provide this care not share this space?
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