Next week it will be one year since our 14-year-old son Ezra was discharged from hospital with a life-changing disability. A rare nerve condition triggered by Hodgkin’s lymphoma has paralysed his arms and legs. He has had to become an advocate for himself, and we have adjusted as a family to a new way of living. Much of the shock we’ve experienced over the past year has had nothing to do with Ezra’s disability, and everything to do with his treatment from the world around him.
Even sitting in a wheelchair, it’s clear Ezra is tall for his age, more man than boy. Which is why it’s weird when complete strangers talk to him like he is four rather than 14. There is a specific kind of wide-eyed, high-pitched, over-friendly thing people do when they see him.
“Hiiiiiiiii,” they say, head cocked, with an enormous grin.
I half expect them to pat him on the head like a small puppy.
“Do people know they can just not talk to me?” he says, when we’re out of earshot.
I’ve started to carry Post-It Notes and a Sharpie with me at all times. Why? So that when cars are parked in disabled parking spots without a permit (which is more often than not), I can put notes on their windscreen reminding them that they have just made the world less accessible. Or sometimes I just write the word Selfish and draw a dick and balls. I am nothing if not an excellent role model for my children. There is no reason to park in a disabled parking spot if you don’t have a permit. Not even if there are no other parking spots available. Not even if you’re just dropping something off or picking something up “quickly”. The only reason to park in a disabled parking spot is if you have a valid permit displayed and require that spot for your accessibility needs. That’s it.
Despite the very extensive and detailed application from a team of medical experts, Ezra was rejected from the NDIS three times. “Great news,” I said to my quadriplegic son. “You don’t have a disability.” Talk about gaslighting. The NDIS seems designed so that to get (and retain) any means of support, you have to present as the very worst-case scenario, indefinitely. It relies on dehumanisation to function.
Once Ezra was in the NDIS system (turns out he does have a disability), we applied for funding to modify a vehicle so that it could be wheelchair accessible. We were told we would receive a decision on our application within 21 days. It’s been over 121 days and we’re still waiting. We can’t go on the waitlist for a car modification until our application is approved, so we are put on a waitlist for the waitlist. The absurdity of it all would be funny if it wasn’t so degrading. While we wait, we use our current funding to hire a wheelchair accessible car. The cost of car modification is about $50,000. The cost of the hire car this year alone has already exceeded that. The mind boggles. The lack of logic, transparency, efficiency and consistency means there is always a fear that the funding you rely on could be pulled at any moment. And it often is.
I ask Ezra what other frustrations he’s had over the past year. Top of the list? Every time we leave the house a small child will usually loud-whisper: Look! That boy is in a wheelchair! and point at him. It’s exhausting.
“It’s also really patronising when people call me brave,” he says, “when I’m just doing something normal like going to school.” To be clear, he is brave. He is the bravest. But what are you implying when you call someone brave for just existing in a disabled body? He gets the subtext. I explain the concept of inspiration porn. How people objectify those with a disability to make themselves feel better. But because he is a 14-year-old boy he just says, “LOL, porn.”
“It’s not that I’m proud of my disability,” Ezra says, “but I don’t have a choice, and so I’m proud of everything I’ve achieved and how I manage everything … But also sometimes I just really miss hanging out with my friends like I used to. So, it’s OK to be both things at the same time.”
We couldn’t be prouder of him, or the way he has navigated the past year. He has done his part to adjust and adapt. But we don’t want to teach him that he should continue to lower his standards, to become smaller to accommodate the world around him. We don’t expect anyone to make our lives easier but, at the very least, please don’t make his life harder. I come armed with Post-Its and I’m not afraid to use them.
• Natasha Sholl is a writer and lapsed lawyer living in Melbourne. Her first book – Found, Wanting – was published by Ultimo Press in 2022
