It’s been a crazy few months, putting my face in the spotlight to highlight concerns I have regarding assisted suicide in New Zealand. Four years ago, I was an intensely private person, no photos of me exist that show the full extent of my injury I sustained as a 17 year old where I was given the label ‘tetraplegic’.
Since that day, I have struggled to come to terms with my broken body and mind. Early on, I tried to end my life with little success. After an explosive earthquake that rocked my world and broke my city, I attempted suicide again, and again, and again… I became used to the sounds of ICU, of waking from a coma, of feeling so angry I was still alive to face my seemingly insurmountable problems.
I decided if I was so utterly useless at ending my life, I’d get someone else to help so embarked on a journey down the road to assisted suicide. I had an ‘incurable condition’, I was ‘suffering intolerably’, and ‘was in a state of ‘irreversible decline’. Boxes ticked.
An unavoidable neck surgery that went tragically wrong plonked itself into my ‘miserable’ life leaving me more disabled, more dependent and unable to continue with my career. So I lay in bed, joking that without triceps, I had shoulders with stubs for arms. I’d wave my elbows around like a Tyrannosaurus Rex.
After the surgery and following more surgeries to ‘fix’ some of the damage from the first, I slept for the first time in 20 years. But not like I had before the surgery, instead, I slept for days, catching up on years of missed sleep. I started formulating new ideas with the help of an academic friend at University. I read books, and it dawned on me, perhaps, what I needed was to change the way I saw myself. Perhaps instead of the bundle of tragedy, I was something else, something beautiful. A survivor. I enrolled in a PhD to explore discourses related to disability and it gave me more food for thought. What if the health professionals who had encouraged me to explore assisted suicide overseas were … wrong. Light-bulb moment.
So I told my story. At first it was therapy, then as the Bill for assisted suicide came into play, I signed up to alert people to another narrative. Perhaps instead of assisted suicide, we as a nation, needed to look at the supports already in place for people in my situation and others with impairments and illnesses. Perhaps we needed to explore why people wanted assisted suicide. Perhaps there needed to be more research done instead of offering death as a solution. It may be a choice for some, but for others like myself, we would choose it because for us, it would be a solution. I made a submission against the End of Life Choice Bill along with thousands of other disabled people. It seemed I wasn’t alone in my fear. I wanted to know why I would have the option of death due to my disability (which may not be the problem, not that any health professionals have ever got to the bottom of why I wanted to die, although enough had said ‘I wouldn’t want to live if I were you..’) yet for everyone else who was able bodied, they would be offered support.
Strangely, the more I told my story, the more hate I exposed myself to. People didn’t want to hear I had ‘been encouraged to die’. It wasn’t possible, I must be lying. The Bill was ‘safe’, it was ‘just for terminally ill old people whose suffering was unbearable’. It was about ‘choice and compassion’ – I challenged that dominant narrative and was crucified for doing so. It hurt. I didn’t want to take away choice, I wasn’t even particularly opposed to the concept of assisted suicide, being a secular, politically left-leaning academic who had ‘stood’ on both sides of the debate. I just wanted to know that there would be no unnecessary deaths. That no one with a disability or illness like myself would choose it as a solution due to the lack of support from our current health system. There were systemic issues and these needed to change before the discussion of assisted suicide entered our Parliament. I figured reason would prevail, I was naïve.
I contacted Ministers of Parliament, desperate to talk with them about some of potential issues I could see, yet all but a few didn’t want to talk. I acknowledge that a few Ministers did take the time to listen even if some of our views were conflicted, Chloe Swarbrick, Kieran McNulty , Ruth Dyson, Maggie Barry and Simon O’Connor. However, I learnt quickly Parliament was not a place that catered to ‘my kind’.
At one point, after a meeting with an MP, I was ushered into an area with some other disabled friends who also shared similar concerns about the Bill. We weren’t sure how to exit the building as for those of us who used wheelchairs, it is a maze of locked doors and permission only lifts, so we waited to be escorted out. A very aggressive security guard approached us and ordered us to leave. We explained simply going down the lift he suggested would not get us out. Ignoring our answers, he became very loud and combative, one of the women I was with has terminal cancer became visibly upset. We tried to explain we had been led to the area by other security guards and our MP’s whom we had had arranged meetings with. Suddenly the Right Honourable Trevor Mallard appeared and again, we were sternly ordered out of Parliament.
We were confused with the aggressive tone of the Speaker of the House and found ourselves tossed out quickly through the maze of lifts. Once outside, we sat there dumbfounded, in tears and bewildered at what we had done wrong. Some alcohol later (mixed with antibiotics and my other cocktail of medications) I was tucked up in bed, licking my wounds and wondering if I had indeed done something wrong.
I returned home, had a small mental breakdown, picked up the pieces and trudged on, in part due to the anger I held due of the recent suicide of a young disabled friend who also did not receive the support she needed.
Months later, I returned to Parliament to listen to the second reading of the Bill. Once again, Ministers refused to meet with me. An hour before the second reading, a group of us with serious health conditions were told ‘the gallery had been booked out’. Luckily, we pulled some strings and we got our chance to watch the debate. I was separated from my personal assistant and partner as his hair was ‘too long and he was not wearing a suit jacket’ so my medication and support person was not allowed to accompany me into the public gallery. I wished I had dressed him as a guide dog, he might have been let in then. I crossed my fingers I wouldn’t have a choking fit.
The debate was interesting, soul crushing, hopeful and hard work to watch. As the Ministers said their speeches, there were cheers from the gallery… it seemed to have been booked out by those in the ‘pro Bill’ camp. We felt our voices, the very voices that should have been heard, weren’t. A few politicians stood by us and shared their concerns but theirs was not the popular voice in this debate.
The Bill was voted through. So now we wait, for the ‘safeguards’, for the ‘amendments’. Yet that naivety I had starting this journey has gone. To win, it seems dirty politics are indeed real and alive and kicking within NZ Parliament. That the voice of the people is really those that yell the loudest, those that lie to blindsight the public of the potential risks and concerns the ‘invalid’ community have. Invalid, now there’s a word to sum us up according to this whole contentious issue.
All I can say, is that the fight isn’t over. Those of us who are eligible to die are fighters, we were made that way when we sustained our injuries, were diagnosed or went through the trauma we have endured. We have been the silent voice in this debate, but I’ll be damned if I’m going to sit back, munching on my morphine and tramadol while watching my friends disappear down the rabbit hole of despair that may now lead to an early death in NZ. I will not rest until I know we are safe and valued as citizens of NZ. I refuse to spend one more day feeling like a second-class New Zealander based on my broken and beautiful body and mind.
We will be heard.