LETTER TO JACINDA: WE ARE ONE.. EXCEPT IF YOU'RE DISABLED
Jacinda, I’m so proud of the way you have handled the tragedy that affected my city of Christchurch. The day before the terrorist shooting I had spoken to a group of students about road safety and afterwards, a group of refugee students came up to thank me. My heart breaks to think they may have lost family and friends.
I love that you spoke about inclusion, that ‘we are one’, because as a New Zealander, these are values we share. I often speak to people about kindness, love, forgiveness and strength. But Jacinda, I’m confused that you feel all New Zealanders should feel a sense of inclusion, because I don’t.
I know you have recently come forward and have given your support towards David Seymour’s End of Life Choice Bill; that suffering New Zealanders should have ‘a choice’ in how they die. I totally understand your sentiment; it comes from a place of compassion and caring. But I feel there is a darker side to this bill that not many think about, including yourself. I’m not blaming you, when you grow up not having been through what I’ve been through, I know I’d share your views.
I want you to think about a scenario. Your daughter is involved in an accident. Her injuries include a high spinal cord injury. She is paralysed from the neck down. Because of this, she is vulnerable, to other secondary conditions such as pressure ulcers, syringomelia, pulmonary embolism, pneumonia and other lung problems, the list goes on. Sometimes, these conditions can become terminal, especially if left untreated, or unnoticed - paralysis also means you often have no feeling from the impairment site down. This in itself will be devastating for her, and of course, for you and your family.
She may also want to attempt suicide. This is very common for people who have sustained spinal injuries and impairments. Luckily, with the right support, these suicidal moments will often pass, but she will be vulnerable to ‘dark moments’. However, if she’s over 18, and the End of Life Choice Bill is in law, instead of suicide support, she will be offered assisted suicide, given her condition which could easily be ‘terminal’.
You may think this is worst case scenario stuff, that I’m being ‘over dramatic’. But I am like your daughter. I had a spinal injury, I was suicidal, I even attempted suicide and ended up in hospital. I was repeatedly told by health professionals because of the severity of my injury, I should explore assisted suicide. Luckily, it was not in law otherwise I’d be dead.
The irony is that before surgery three years ago to restabilise my neck injury, I was a lot more mobile. I had sensation so the chances of becoming ‘terminal’ were rare, instead I chose to try to take my own life, not because of my injury, but because I had no support and my way of coping with life was to ignore my grief and severe lack of sleep and work harder. Since the surgery that went terribly wrong, I have suffered more paralysis, am on 24 hour care and have terrible neuropathic pain and have lost feeling.
I have also had a chance to think about my life, make the necessary changes, get the support I needed from friends at university and, in a way, ‘start again’. I am completing my PhD, I mentor most young New Zealanders with a spinal injury, I teach students about road safety but most importantly, I am happy. I still have my dark moments, I’m only human, but I know with the right support, I can get through them.
I spoke to the friend of a gorgeous young guy a few weeks ago. He has a high spinal injury, a pressure ulcer that does not look good and may have MRSI so will be untreatable with antibiotics. He currently wants to die so is not bothered by his pressure ulcer as he can’t feel it, it’s getting worse because of this and his poor mental state. He has no support apart from his friend and sees no future. He’s in that dark place where I was when I tried to take my life. He will die because of this Bill, and I know, we will lose an amazing young guy with so much potential, potential he can’t see. He feels like he’s a burden, doesn’t have enough support and feels he has no choice.
I am not speaking out for religious reasons, or political. I’m speaking out because I am included in the group no one wants to think about that will also be affected by this Bill. I’m speaking out in the hope people might see what ‘having a choice’ also means. It’s not just about stopping the suffering of a few, it’s also about giving up on people like me, like my young friend, like many other vulnerable New Zealanders this bill will affect, and their families. In New Zealand, disabled, sick and ill people do not have enough support, we can’t even think about putting a bill like this into law until that support is there, and from first-hand experience, it’s simply not there.
With overspending in the public health sector, cutbacks are already happening and plans are in action to decrease spending in the disability sector. CCS Disability Action chief executive David Mathews suggests the current situation is “a crisis”. He said despite denials of a national rollout, he was seeing clients' packages cut each week as a result of downward pressure.
President Gerri Pomeroy of the Disabled Persons Assembly (DPA) said. "Taking away from barely enough leaves not enough – this isn't just about some line in a budget, it's about disabled people being able to live their lives at the most basic level."
This will hurt our most vulnerable who won’t see assisted suicide as a choice, but as a solution. How we treat our most vulnerable is a reflection of who we are as a society.
Jacinda, this isn’t about blaming you, for many, including myself, you are someone I look up to. I’m proud you’re our Prime Minister. You’ve shown the world the true meaning of compassion and kindness, please apply those same values to New Zealand’s most vulnerable population. We need suicide prevention, not assisted suicide. Please. Think about other New Zealanders who could be affected. I am somebody’s daughter, just like you, just like your own daughter.