Pain In The Neck


Words || Erin Christie

I took the call as I drove to my tutoring shift, with Hannah my support worker snapping down the line, wondering why I couldn’t just come in on Friday. I’d decided months earlier, when my first letter had arrived, that the NDIS wasn’t for me. However, being the polite, tolerant, perfect and humble being that I am, I agreed to come in on Friday, and made a mental note to email my boss and change my Friday shift at my third and final job. The call left me frazzled, but within a year’s time, I would be just as peeved with the National Disability Insurance Scheme as Hannah seemed to be, if not more.

My disability is so mild that I didn’t know I had one until I started school. When one random kid asked me why my neck was crooked, all I had in response was: “it’s not?” I curiously sought out my parents, who had to explain that my neck was vaguely contorted because I had cerebral palsy. I didn’t know what that meant, just that it seemed to bother my bullies a lot more than it did me. However, things worsened as I hit puberty. The slight bend in my neck became so pronounced that my ear practically touched my shoulder, and a series of spasms began in my knees, thighs and back that ranged from uncomfortable to unbearably painful. On closer inspection, the doctors affirmed that the dystonia part of my disability had emerged. The spasms could be controlled with benzodiazepines, and my neck was remedied mostly with a series of injections of botulinum toxin (yep, Botox) in the affected area. We got these through a free clinic at Westmead Children’s Hospital, and the $6 for a bottle of Valium per month barely broke the bank. However, things always become more complicated in adulthood.

The National Disability Insurance Scheme was introduced into Federal Parliament in 2012 by then Prime Minister, Julia Gillard. It was passed in March 2013 as the National Disability Insurance Scheme Act 2013, and was intended to act as a kind of Medicare for those with disabilities. I remember watching Gillard excitedly on TV at the time of announcement, shaking hands and grinning over her achievement. As a huge Julia fan, I affirmed to anyone who would listen that I was thrilled to see such attention aimed at my community of friends, and the introduction of a scheme intended to help them. However, I never had myself in mind as a candidate to receive funds. I was always taught by my parents that I was no different from anybody else, and therefore didn’t need preferential treatment unless it was absolutely necessary. We never applied for a pension, or any kind of funding for my issues. I always did my best to put my determination towards acting as though it didn’t exist.

Following my graduation from the Children’s Hospital, I was put into the care of NSW’s top neurologist and dystonia specialist. I was sad to say goodbye to the Winnie the Pooh wall murals and plastic cups of jelly beans I was given at the end of every injection session, and also, it would seem, a fair amount of money. My parents are still helping me to afford both seeing my neurologist for check-ups and injections, and the Botox used on my neck – and now my arm – which is billed to us by a pharmacy out of state. However, when a bout of spasms so painful and uncontrollable landed me in hospital in 2015, extra medication was added to the pile. Thinking about life beyond study gave me serious anxiety, knowing I’d have to factor in all this ‘medical shit’, as I often refer to it, with other bills. My obsession with financial independence and tendency towards workaholism seems a little less insane when framed this way. However, with a condition that is constantly growing and changing and finding new ways to challenge me, I supposed some help from the NDIS wouldn’t be such a bad thing.

Hannah had resigned by the time I got there – hopefully because I forgot to attend the Friday appointment. I began detailing my medical treatments to the new case worker, who cut me off swiftly.

“The NDIS doesn’t subsidise medical treatments.”

I’m sorry, what the fuck? If they weren’t going to help me with this array of treatments, or any I might need in the future, then what good were they? We asked for help with a gym membership, with one of my doctors recommending it so that I could build on my muscle tone and strength. That was shut down as well, and we were left in a minute or two of shocked silence, wondering what the hell to ask for now.

If I’d done my research, I would have known that the NDIS is geared towards linking people with disabilities to the community, breaking down stereotypes and ensuring quality assurance and best practice among service providers. Their funding was to better me as an individual with a disability, rather than to help improve my quality of physical existence. This is such a subjective goal that I’m certain I still don’t fully understand it.

The tone of the meeting changed as we discussed my life with a disability. My mother beamed with pride as she helped me explain my multiple jobs, my internships, my writing experience, my ability to drive, ride horses, etcetera, all with very minimal help. That information was fed back to another administration clerk, who then made a decision on how much money I would receive. My angst over the lack of funding for medical treatments aside, does this not seem entirely cooked? Where is the team of physios, doctors, specialists – qualified people – helping make a judgment based on their assessments of the individual? What happens to the parents and carers who lack the communicative skills to express how much their loved one is suffering, or how much they could benefit from funding for program X or Y? This flawed system, like so many others, is subject to the same classism and ableism we see in general society.

I haven’t spent any of my NDIS money. It is another testament to this disorganised system that no one has ever given me a clear answer on how to do so. I recently spent an hour with my physio just discussing how we could access the money allocated to me in order to pay for our sessions. I apologised again and again for my lack of knowledge, but she eventually shut me up by saying: “don’t worry. I think you came here expecting us to know how the NDIS works, when the truth is, no one does.”