‘At Any Point, Anybody Can Become Disabled’ The Real-Life Health Story Behind Spinal Destination

Fourteen years ago, a sudden illness left writer and director Paula Whetu Jones paralysed from the waist down. How she learned to live – and work – after this out-of-the-blue health event has become the dark comedy series Spinal Destination. She talks to Capsule about the process of feeling comfortable in a changing body and the importance of being visible, to stop people living with disabilities from being put in the ‘too-hard basket’ by society.

“I watched it with my old doctor and his wife and – although they were laughing – they were both like, ‘Ooh, this doesn’t show the medical profession in a very good light…’” recalls Paula Whetu Jones (Te Aitanga a Mahaki, Whakatōhea, Ngāti Porou). “And I said, ‘Yeah, but did One Flew Over The Cuckoo’s Nest?’”

Even if you didn’t know Paula’s impressive resumé as one of Aotearoa’s most prolific writers and directors of projects like Whina, and Waru, it would take only one conversation with her to realise what she does for a living because she is very funny. Not in a slapstick way – although the physical humour in her new show, Spinal Destination, is definitely on display – but in the darkest of dark humour ways.

And that’s how she managed to take one of the most traumatic and terrifying experiences a person can go through and turn it into… a comedy series. Fourteen years ago, an illness saw Paula paralysed from the waist down and her life as a wheelchair user began in a spinal unit, as she struggled to grasp what had happened to her and how long it would last for. This experience has become Spinal Destination, the new comedy on NEON that stars Bree Peters and Tom Sainsbury.

“I knew that I wasn’t going to be able to do anything earlier, in the first 10 years,” Paula says. “I didn’t know what was going on with my body, and I just wasn’t ready. I’m still really not ready, after 14 years, to accept that this was my new self.”

To begin with, when the mystery illness arrived and Paula found herself unable to walk, she was busy with researching and “trying to fix myself.” But a few years after she moved out of the spinal unit, after that initial phase of shock had died down, she found her diaries from that time period. “I was re-reading them and realised, ‘This shit’s really funny,’” she laughs dryly. For a while, she thought she might turn it into a play, but the project kept evolving and in the end, the television series Spinal Destination was born.

The One Flew Over The Cuckoo’s Nest reference is partly about the cast of characters that comes with any group of people being lumped together due to a health crisis but it is also the only comparison Paula can think of about a story being told from the patient’s perspective.

E.R, Grey’s Anatomy, Shortland Street… it’s the nurses and doctors who are the main characters, the patients are literally wheeled in and out to serve a plot point. Spinal Destination offers the rare viewpoint of what it’s like to be suddenly out of control of your body and in full-time care for a period of recovery. There’s a lot of storytelling to work with there.

“It has taken me this long to be comfortable putting my own story up there for the world to see,” Paula says. “But it got to the point where if I’m going to get other people to be honest about themselves and tell their stories, I’ve got to be prepared to do my own. And my own just happens to be a bit different than most people’s.”

It is however an experience that can happen to anyone. “At any point, anybody can become disabled. We’re not in a separate category,” she says. “It was how I saw myself that was my biggest challenge, my biggest hurdle to get over.”

As Paula says, it was a process that took over a decade and she credits her work for getting her through. “My career trajectory helped – when I first got out of hospital, I found it hard to get a job, even though I’d already been doing it for 10 years. So I decided I would have to create my own jobs, and that’s what I did.”

Being one of the directors chosen for Waru, the anthology film where eight different directors each shot parts of a story, helped rebuilt her confidence. But Paula is not one to share platitudes about this kind of process. “I wanted to smash people who were like ‘don’t worry, you’re the same person,’” she says.

“People mean well, they have good intentions. But when anybody loses something that’s special to them, it doesn’t matter what you say, it’s not going to make anyone feel better. But what you can do is be visible – to show people that there are others out there, living their lives and getting on with stuff.”

People living with disabilities can often get pushed into the background, because people are either panicked about saying the wrong thing, or the general fear of the unknown that ends up putting them into ‘the too-hard basket,’ Paula says. On top of that, there are the logistics of having to navigate a world that is simply not accommodating for anything other than able bodied people. “At every step of the way, shit is made near on impossible… to actually get into the world.”

In her work as both a writer and a director, Paula is working to increase the visibility and also the human scope of roles and stories for disabled people. She cites her work creating a role on the TVNZ show Testify, where the character is a fully-rounded human with a job, and a social life, rather than having ‘the girl in the wheelchair’ be her whole personality.

But creating the role is only the first challenge – Paula says getting actors who are actually wheelchair users in real life hired for the roles is another part of the advocacy work she’s constantly having to do. “Chances are, if I hadn’t been there, she wouldn’t have been written in in the first place and they might have cast someone that walks.”

Having Paula in such a high-ranking position in the production means that other people who use a wheelchair – be it actors, producers, writers – know that not only is the material going to be representative, but the set will be possible to move around as well. “Are you going to go for a role where you don’t know if you’re going to be taken care of?” says Paula. “As soon as people know I’m in a chair, they relax a bit.”

The result? Talented people who can concentrate on the work itself, and series like Spinal Destination making its way onto our screens, showing the comedy and tragedy that comes with massive life upheavals. “It’s important to be seen, because otherwise the world is going to miss out on all these fabulous people, who have all these fabulous things to do and say.” 

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