A few weeks ago, while I was with my father who is still in hospital after sustaining a catastrophic stroke, I got a phone call. I was asked if I could participate in a political debate. I would be debating against a politician called David Seymour. That in itself was daunting as I knew he was a seasoned debater and took no prisoners. Then they told me who'd be on my team, the ex Prime Minister, Sir Bill English and Dr Leonie Herx - I think my heart stopped for a moment.. how did I even end up in this situation?
The next thing I knew, I was flying to Wellington. I had crammed a weeks’ worth of information into my mildly dysfunctional and preoccupied brain. I knew about the topic from a personal perspective, what I was unfamiliar with were the technical aspects. I arrived in Wellington and met Sir Bill English, his wife Mary and Dr Leonie Herx.
I mused over the irony of the situation. My secular family have always been very staunch liberal voters and here I was meeting with the former conservative Prime Minister who I had never given much thought too. Yet in Wellington, I met a bunch of people who I’m glad to say have the biggest hearts I’ve known. Sir Bill and his wife Dr Mary English were so encouraging and thoughtful, I felt ashamed I had ever judged them or assumed they would be cold and conservative due to their affiliation with a political party. I’ve learnt you can’t judge people on their choice of religion or politics; humanity and kindness are a much better gauge of who we are as humans. As for Dr Herx, she radiated wisdom and compassion on a scale I've rarely seen.
The debate was terrifying, I’ll be honest. But when I could, I put my two cents into the conversation and spoke as best I could from my heart. While the other team seemed fractured, Leonie, Bill and myself were a tight team despite only just meeting each other. The debate was about the New Zealand End of Life Choice bill and I was on the opposing team – another irony considering that for most of my life, I’ve been extremely pro assisted suicide, to the point of deciding to go down that path myself. But that’s why I was there. To tell my story. To alert people to the dangers of the Bill. I even know of people who would use it because they are in that dark hole that I was in for so long. I only managed to climb out due to a botched neck surgery that gave me time to reflect on my life and what it meant to be alive. I had been encouraged by the suicide outreach clinic to pursue assisted suicide overseas due to my impairment – tetraplegia. What they failed to do was ask if my problems were as a result of my injury, or something else. My injury probably compounded the issues, but the problem was with how I was coping with my life.
Another irony, as David argued that giving people the choice to die alleviated their loss of dignity, independence and pain, I sat there more disabled and in more pain from the surgery, yet more at peace than I’d ever been due to extensive personal work on my mental health and broken mind. David’s team also included Dr Jack Havill, a palliative care specialist.
Half way through the debate, which was being filmed, I didn’t feel great. I looked down and saw that the bladder surgery I had had days before had reared its head and I knew I was leaking. Luckily, I was sitting and wearing red! Just after I noticed and while I was fighting the pain from it, Jack started arguing about my eligibility. He said “she can move her hands and arms, she’s fine, she’d never fit the criteria…”. However, I know first-hand that I do fit the criteria for an assisted death. After the debate, he kindly offered an apology of sorts.
My summing up speech was like bad guacamole, as the pain was intense and I was panicking about the leaking. Here I was, in the position that not many are in, qualifying for assisted suicide and debating with able bodied people about a Bill that currently only I’d have access too due to my condition. If it had been law four years ago, I’d be dead.
And hearing the opposing team talking about choice, like it was something we all had access to, in an unbiased form, without taking into account grief, pain management, coercion from feeling like a burden and all the other issues that colour our choice as disabled people. I felt frustrated, they spoke about ‘support’ and the safeguards, but it was only a few years ago, I had been persuaded to die from the people they were telling me were there to help 'people like me'.
I don’t want to take choice away from people, and it’s hard to argue when someone talks about terminal cases and pain, watching people you love suffer or thinking that if you were to be diagnosed with an illness, you could have ‘a pleasant way out’. Along with those cases there will be others whose also ‘choose death’. Vibrant people who have had a traumatic injury that, in some cases, develops into terminal conditions, because they feel they have no hope at that moment. The reality is that our current health system does not provide the support needed to help people live, or even recognise that there might be another way It’s not a choice for us when we aren’t treated equally, in society or within the healthcare system. It isn’t a choice when we feel there are no other options.
After the debate, my mother helped me into the able-bodied toilet and I had a chance to clean up some of the mess. Afterwards, my mother turned to me. I knew she was pro assisted suicide; she had even liked pages on Facebook that were pro the Bill. She said, “Well, after hearing you speak, I’ve changed my mind”. After everything I’ve been though, her words meant the world to me.
I flew home, grateful to have had the opportunity to debate and meet some of the loveliest people I feel fortunate to know. And yes, my body let me down, but my mind was abuzz with hope and once again, I thought how lucky it was I didn’t die those years ago. Because although I might be one of New Zealand’s most hated people given most kiwis want the 'choice' of a death with dignity, I feel grateful, humbled and determined to expose the darker side of a flawed Bill. I’ll continue to fight, because I know things others don’t know. I know people who will die because of this Bill as they feel they have 'no other choice'. I know about losing dignity, about unbearable pain, losing independence, and through suffering, I know about hope, and that even in the face of death and disability, there is beauty.