On a day just like any other in Melbourne’s outer suburbs, 21-year-old Jess sits alone on the front step of her family home, blowing bubbles to pass the time.
This is the reality of living both with a disability and below the poverty line.
Wednesday night’s episode of Struggle Street introduced us to Jess, and her mum and full-time carer Michelle.
While most women in their early 20s are studying at uni, travelling, catching up with friends or starting their first ‘real’ job, Jess is mostly housebound by Ehlers-Danlos Syndrome Type 6, a condition that affects the body’s connective tissue. Currently, there is no cure.
As Jess put it, “All my collagen is faulty. Without collagen, you fall apart”.
Three years ago, single mum Michelle was forced to quit her job to take care of Jess. Her Ehlers-Danlos Syndrome Type 6, as well as autism and a mild mental disability mean she requires around-the-clock care.
Both receive benefits from the government – disability and carer’s pension. But this only covers so much. On a day-to-day level, things like a wheelchair van and hoist would make Jess and Michelle’s lives considerably easier.
Their story, however, is not uncommon. In 2016, statistics showed three million Australians were living under the national poverty line of $426.30 a week.
Despite Michelle's daily financial struggle to make her daughter's life comfortable, it pales in comparison to the idea of planning your daughter's funeral.
"It's horrible, we're looking at a pre-paid funeral now. I don't know when the time is going to come, but when it happens, I want to be able to go, I'm really glad the funeral is in place," she said.
"It's something I can't stop thinking about... burying your child before yourself."
As soon as the credits rolled, there was just one question Australians were asking: How can we help Jess?
In under an hour following the show, the 21-year-old's GoFundMe page raised around $28,000. In the months before, it sat at just $120.
Surpassing their original $60,000 goal, the GoFundMe page is currently sitting at almost double that, at $111,424 as of Saturday afternoon. This is thanks to the remarkable generosity of Australians who may never meet Jess, but after hearing her story, felt compelled to help in whatever way they could.
Whether it $10 or $100, every dollar donated will go towards the mother and daughter travelling to Baltimore in the US, where Jess can receive the treatment to live her life as comfortably as possible.
This, to spend what's left of their time together enjoying life, is all Jess and Michelle hope for.
If you would like to help Jess and Michelle, visit their GoFundMe page. You can also catch their episode of Struggle Street on SBS On Demand.
LISTEN: The Binge discusses why Struggle Street is not poverty porn, it's real life...
Top Comments
These are types of serious conversations that we need to be having. I have a disability brought on by an autoimmune issue 8 years ago, which at 45 yrs of age after many years of struggling as a single adult female I was just getting my act together financially & career wise. I moved to Melbourne to be closer to family. So I can relate to their situation. I have an autoimmune that is rare & also resistant to drug therapy, though we have been lucky for the last 7 years the doctors were able to keep it at bay, unfortunately the protocol has stopped working & new, harder to access treatment is being implemented. I am currently doing battle with the nonsense that is the NDIS. I believe that rather than just looking on a case by case basis there needs to be better awareness & access to & around body's & funding for people like jess with less well known illness' Yes we know about the cancer's & the huge funding drives that go on for these, but there are many other illness' that due to their rarity fall under the radar so they don't get the support they need, they're thrown into a huge pot of of others due to their lack of press or representation in public discourse
Though people like Jess' who's lives may unfortunately be shortened the funding that is sorely needed so that they will be comfortable & happy in the time that they have, & their families aren't having to live with the added financial burden to the already emotional & social toll they're living with.
I believe there needs to be more pressure on how the government is implementing the NDIS, through the NDIA it's a very adhoc limiting system & that body's that are trying to support those who've struggled for so long aren't getting the financial support they badly need. So we need people to be aware that cases like Jess' aren't in isolation, our economic & governmental structures push the likes of Jess to the fringes because they have nowhere else to go, which to me is a damning reflection on this government & their arrogant disregard for the vulnerable & the socially ostracised people that live with disability (I'm talking about mental health as well herre)
In my humble opinion there's a long way to go to fix this problem & actually get people in government who know what the long term effects of their often restrictive policies have on the lives of the ordinary Australian, who's trying to continue & live a reasonable everyday existence with all the added costs that comes with having a disability & being forced to live either in limited, often unsuitable public housing or a the private rental market that is becoming more & more unaffordable by the day.
Are there any more GoFundMe pages for the people on Struggle Street? It's heartbreaking to watch.