I was invited to speak at the Melbourne Writers Festival again this year. After years of being an audience member, it’s always an honour to speak on the MWF stages and hang in the green room. I wrote and performed a piece on the topic of family at this year’s MWF – it was nice to write something new, but even nicer to hear the stories of my fellow writers: Corey White, Mandy Ord, Jennifer Nansubuga Makumbi, and Sam Cooney. Thank you for having me, Marieke, Gene, Elise and team. You have my heart forever, MWF.
My parents protested racial segregation laws through love. Dad proposed to Mum in 1980 by telling her, “we’re going to Australia to get married”. It was direct, but I realise what a romantic gesture it was now. They packed up some of their belongings in a big trunk, and holidayed in Sri Lanka and Thailand before settling in Australia in 1981.
Dad had lined up a job as an engineer in Sydney before they arrived. Mum could stay in Australia on the condition she married Dad and found a job within a month of arriving.
They got married in Centennial Park on the last day of February in 1981. True to my parents’ hot headedness, they had an argument on the way to the wedding – someone wasn’t good at reading the map.
Mum’s Aunty sat in the back of the panel van holding the wedding cake.
Their wedding was a frugal $87, and Dad reminded me of this achievement when I planned my own wedding.
Mum got a job at a bank, and she worked as a teller for most of her working life here.
My parents had to come to Australia because of Apartheid. My Dad is a white Englishman. He got a job in South Africa in the mid 70s. Mum is a coloured South African, she grew up in the housing commission flats of Cape Town. She had a large, close knit extended family who went to church three times on a Sunday. Mum was an elite gymnast – travelling to Germany to compete, and later judging and coaching here in Australia.
My parents met at a party in Cape Town in 1978. While it was illegal for them to court publicly, my Mum’s family welcomed Dad and protected their secret. A couple of times they were almost caught – and the consequences of being caught as a black and white couple would be that Mum could have been sent to jail.
So, they came to Australia to live together freely.
My parents received a letter, saying a mixed marriage would never work for them. They’ve been married almost 39 years.
They moved from Sydney to Albury in country NSW in October 1981. It was cheaper to live there, and much more spacious than the cockroach infested flat in Sydney. I was born two months after.
We moved to a small town called Walla Walla when I was two. Mum was the only black woman in the town for many years. People would whisper me to me, “your mum is black”, like I didn’t know. They’d tell me that I was red because my parents are black and white and they’d sinned.
I had a great childhood, with my parents at least (I’ve written more about the bullies in my book). They read to me and helped me write stories from a very early age. I played in Dad’s shed, using paint and turps and sandpaper – all things that weren’t good for my skin. I’d dress up in Mum’s clothes – spending hours in her wardrobe. Sometimes I’d use the samples of makeup she got from Clinique. Also not great for my skin. We went camping near rivers and beaches most summers – I hated camping, but anytime I said anything, Mum and Dad would tell me to stop complaining. They now realised I couldn’t do everything they pushed me to do, because ichthyosis and hot weather and flies just aren’t a great combination. I got them back though, on that car trip from the NSW Central Coast, listening to the Tin Lids Christmas album on cassette, all of the way, several days after Christmas was over.
I was a very sick baby and child. Ichthyosis is not just cosmetic. My hospital stays were frequent, and visits to the paediatrician even more so. My parents relied on the public health system. I still do. My hospital files are extremely thick. The nurses who cared for me at the Albury Base Hospital when I was little came to my book launch earlier this year, and gosh it was good to see them.
We received what was then called a handicap allowance from the government – a fortnightly payment – and healthcare card to help with the cost of my creams and tablets.
Mum became an Australian citizen in 1987, and Dad in 2005. Mum gave up work when I was born until just before I started school, and Dad worked for as long as I could remember, bar a short period when he was retrenched. They were each in the Australian workforce for around 30 years, and I’ve been in the workforce for twenty years.
But even if we weren’t working, we are still deserving of support. Everybody is.
As I have been reflecting on my family’s life here, I’ve been drawing parallels between me and my parents, and some other diverse families in the media recently. I was a disabled child, born to migrant parents.
There have been many stories around the deportation of disabled people from Australia. It has got me thinking – how lucky we were then. While I acknowledge my disability is less severe than many other people’s, it still required a lot of care. My parents weren’t Australian citizens for some of the time they received government benefits for me. They weren’t Australian citizens while I was hospitalised and relied on the public health system.
We were the lucky ones. So why aren’t others?
The Australian government sees disabled people as burdens. They believe the cost of medical treatment and disability support outweighs the value that disabled people contribute to society.
Currently, to apply for permanent or temporary visa, disabled or chronically ill people’s fitness is assessed, even if the disabled family member is born here. They can stay if their medical treatment does not exceed $49,000 over their lifetime.
SBS recently reported that more than 15 families who have a disabled or chronically ill family member face deportation from Australia. Complaining to the Australian Human Rights Commission will not help, as the Disability Disability Act does not apply to the Migration Act. It’s only the seemingly cold hearted Minister for Home Affairs who can exercise discretion.
I want to tell you about little Kayban Jamshaad. He is three years old, and lives in Western Australia. He was born in Bunbury, via emergency C section, had life saving surgery a few days later, was diagnosed with severe haemophilia and has an acquired brain injury. He has round the clock treatments administered by his parents, and has regular appointments at Bunbury and Perth Hospitals.
His mum Shizleen works as a social worker (after receiving an Aus Aid scholarship to study here) and his dad Ahmed is his full time carer. He has two older siblings. His family came from a the Maldives in 2013. When Kayban was born, his parents wanted to return to the Maldives. But that changed when Kayban was in intensive care. His mother said, “we can’t take him home, we can’t do that to him because there wouldn’t be services there to support him’.”
In December 2018, his family members were granted a permanent visa, but Kayban was not, on the basis that his healthcare needs would be a financial burden on the Australian government. This means he cannot Access the critical assistance needs – without a permanent visa, he isn’t entitled to state disability services here in Australia, and if he went to the Maldives, he would not survive because their healthcare system cannot provide adequate haemophilia treatment. His case is currently before the Administrative Appeals Tribunal.
Little Darragh Hyde has Cystic Fibrosis. He was born in Australia, and his Irish parents are teachers in rural Victoria. His family were initially asked to leave Australia on 18 June, due to the costs of Darragh’s medications on the Pharmacuetical Benefits Scheme. Had he returned to Ireland, there would have been a 12 month wait to receive medication there. Fortunately his family were granted permanent residency after a public media campaign and appeals to the Minister.
Disabled people visiting Australia aren’t exempt from this discrimination either. People are denied holiday visas because their disability is deemed a burden on the country.
This systemic discrimination needs to change. It shouldn’t take a change org petition to show the value of disabled people. The way disabled people are viewed needs to change.
In some countries, there is not adequate medical care or allied health supports for disabled people. Disability is seen as a curse, and some disabled people are forced to be hidden away. They are not given the same educational and employment opportunities as the rest of the community. Disability rights and essential mediation in developing countries are sometimes non existent.
And here in Australia, the government doesn’t see the skills, the richness, the value, the culture that disabled people bring. We are always the other.
With these discriminatory laws, Australia will never have a truly diverse multicultural disability community. I want to see other disabled people of colour living here, thriving here, part of my community. Our exclusionary migration policy is why disability is so white.
My family is why I’m so strong, why I feel supported. The public health system is also why I feel supported, and why I’m able to live a full and active life. I can pop into hospital outpatients, for free – well your and my taxes, and when I say pop in, I mean an hour wait, at least – and get some advice and scripts to help me heal.
These children I mentioned are growing up here. Their languages are here. Their communities are what they know. Their friends are here, their futures are here.
I ask our government to show compassion. To stop seeing disability as a financial burden, and see disabled people as human. Have a heart, and keep families in Australia, together, where they belong. Let them stay.
I don’t know what my life would have been like if I wasn’t born here, or if my family was sent back to South Africa or England because my medical treatment cost too much. But I’m so glad we were given a go. All disabled people should be.
You might be interested in my book, Say Hello. It comes in paperback, ebook, audiobook and you can even borrow it from the library. More details here. If this piece of writing has made you think or you’re using it in your work or school, please consider buying me a drink.