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A life in chronic pain – John's Story #DefendNZ Documentary 3

John’s eligibility under the End of Life Choice Bill:

John was born with spastic hemiplegia, a form of cerebral palsy, after oxygen deprivation damaged his motor neurons. Following a bout of glandular fever, he developed chronic fatigue syndrome that affects his nervous system and periodically results in further decline in mobility. While John’s cerebral palsy is stable, the side effects of his condition have become worse over time. John experiences chronic, and often intense, pain. His mobility is likely to continue to decline in years to come. 

The criteria for assisted dying under the End of Life Choice Bill are very vague, so even people who have relatively stable conditions like John’s could qualify under the “grievous and irremediable medical condition” category. His mobility decline means that he is “in an advanced state of irreversible decline in capability”, and he regularly experiences suffering which the Bill requires only be intolerable in his own perception. Should euthanasia and assisted suicide be limited to those with terminal illness, John would not be eligible. However, experience from Canada would suggest that borderline cases such as John’s - where a person has a disability and perceives unbearable suffering but is not terminal - would be among the first to test the boundaries of the law in the courts.

A life in chronic pain – John’s Story

Some people come into the world in a flurry of chaos, and the entry point for John was nothing less than dramatic. Helma had a difficult pregnancy with John, often feeling unsure whether he was still alive. When she started to bleed she was airlifted from Westport to Christchurch for an emergency Caesarean section. John was born 10 weeks premature with a head so tiny that it could fit into the palm of his mother’s hand.

She recalls, “He was only four-and-a-half pounds and we had to dress him in doll’s clothes to bring him home.” She now laughs at just how big a man has grown from such a tiny body.

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The lack of oxygen at birth damaged John’s motor neurons and resulted in spastic hemiplegia, which is a form of cerebral palsy. It means that one side of his body is weaker than the other. He has an incurable medical condition that involves disability and in his case, a decline in mobility as an adult.

 John’s earliest memory is of pain, when at the age of four his Achilles tendon was cut in order to lengthen it. He vividly remembers screaming when his foot was pushed down to flatten it. Doctors tried to explain to him what was happening, but he was just too young to understand. This was only the first of many times when John has felt vulnerable in a medical setting.

 As John grew it was obvious that doing physical things was a struggle for him, but his parents encouraged him to find a way, to try his best and to always persevere. “My parents always told me I should do everything that everyone else did, even if I did it slower and worse… so I ran the cross country. I did all kinds of things,” says John. Adopting this mindset fostered resilience that would serve him well.

 Growing up with cerebral palsy was difficult, and at times alienating, especially when he was bullied by fellow students. Jean-Marie, John’s older sister, remembers, “When you’re young and you walk funny, people automatically think that you can’t talk, and you can’t do other things. I think the hardest thing for him was to push past the barriers and let people know that he was a real person with normal thoughts and feelings, and just his body wasn’t like everyone else’s.”

John remembers feeling awkward and clunky as a teenager. As his frame enlarged, there was more strain on his tendons and muscles. His pain increased and he often had falls. At the age of 17 he required tendon release surgery again. The resulting scar tissue limits the mobility of his adult body and he needs a cocktail of strong pain medication to manage everyday tasks.

 In 2005 a bout of glandular fever caused Chronic Fatigue Syndrome that affected his nervous system and resulted in two episodes of significant decline in mobility. Around the same time John also sustained a concussion following a fall. It is expected that his mobility will continue to decline in years to come.

 “To be disabled is to be vulnerable. And especially when you have something like a mobility decline. It’s a constant low-key tide of grief,” John remarks.

 He feels incredibly grateful for the support he has around him, especially at times when things have become almost too much for him.

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It is tempting to give up in the face of barriers. But I think I have the great grace of a family who won’t let me do this and a community that supports me to keep on trying despite all the setbacks.

It is this support which has enabled John to forge ahead in his quest to prove that his disability does not define him.

 From a young age he was an enthusiastic reader and excelled academically, eventually acquiring a PhD. His mum notes with great pride, “He had three jobs to put himself through university, which I really just admire him for.”

 John’s strong sense of social justice motivates him to be a voice for others with disabilities. “I’m a trustee of a disability organisation called Elevate, and I don’t think able-bodied people really understand how radically vulnerable being disabled can be… a good half of our clients at Elevate are suicidal. It’s really common for people to have extremes of emotion and difficulties that take years to process,” he says.

 One of his main concerns is that able-bodied people, including medical professionals, generally don’t understand that living with a disability can be complex. He explains that a person may well have multiple conditions, or complications that interact with each other. On top of these a person may have to deal with the side effects of medications for these complications which could have the effect of causing additional disability. On several occasions John needed to advocate for himself and he feels for disabled people who lack the ability to do so themselves or lack the support of others to advocate on their behalf.

 With this vulnerability at the forefront of his mind John is adamantly opposed to the End of Life Choice Bill.

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It worries him that the proposed Bill would allow a doctor to authorise a person’s assisted suicide without even having met them before. “As a patient you get your 10-minute appointment with a doctor. The doctor may be busy, harassed and probably underfunded. Maybe they don’t have expertise in your condition. (I’m not the only disabled person who has had the experience of a doctor having to look up what my condition was.) It gets even harder when you have a complicated set of conditions with complicated physical and emotional realities that might not be well understood. Added to this is the underlying imbalance of power between doctor and patient which would make dealing with what are literally matters of life and death even more dangerous.”

John warns that even if euthanasia legislation were to be limited to the terminally ill, it would still have a detrimental effect on disabled people. “Once you have created the category, once you’ve established the principle that some lives matter less than others, that there are some people whose suicide is not only condonable but is something we’ll assist, through this you’ve established the principle that if you’re weak, if you’re impaired, if your life is difficult, then your life has immediately become discounted. I think that this is not only discriminatory in the short term. In the long term, once it has become integrated into hospital care and into people’s thinking, we would become a less hospitable society for people who are weak and difficult to care for.”

People think about euthanasia as a health issue or a personal choice issue. For me, it’s an issue of social justice. It’s a matter of which lives matter and whether all lives matter.

He knows that people view this Bill through the lens of not wanting to see people suffer. Being no stranger to pain or suffering, or the despair that can result, he continues, “This isn’t for me a question of particular hard cases, not even mine. It’s a question about what kind of society we want to live in. I want all lives to matter not just some. And I want a country that understands that, in life and in law.”

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“I think when people are vulnerable, when they have lower literacy, when they’re at the bottom of the wrong end of power dynamics, we should be more careful and not less. I want a society of solidarity and kindness where everyone is valued.”

One of my biggest fears is that we’re slowly becoming what some have called a ‘throwaway culture’, where people who are more difficult, the elderly, the sick, the disabled… the people who take extra time, the people who are not 40 years old and beautiful… have the space they occupy slowly taken away. I’m worried that this society would create what is essentially a conveyer belt to suicide.

“The worst thing is not feeling your value and there comes a moment when you don’t feel that, and other people have to hold it for you. That’s what our society should be doing with people in pain.”

“It really frustrates me when people say things like, ‘I don’t want to be dependent’; ‘I don’t want to have somebody feed me or toilet me, wipe me or be with me’; ‘I want to be autonomous by myself because that’s my conception of dignity’. I don’t think these people realise how insulting such messages are – not only to disabled people like me, but also to elderly people who need such support daily.”  

“We have this strange idea that dignity is dependent on standing alone. Whereas in fact, none of us actually do that in real life. Especially as we get older we increasingly depend on others. We all need a society in which it’s okay to be cared for.”  

John is wary of the idea that this Bill could put the onus onto someone who is already vulnerable and then claim that ‘it’s their choice to die’ – which he says would be nothing short of naivety. As John points out, “Every choice to say ‘yes’ or ‘no’ comes in a context; A context of who’s with you and what they give you… and a context of the support you get. I am able to say ‘yes’ to life because of the kindness and the support that I get.” 

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Helma reckons that there are very few people who have never thought that their lives are too difficult and never considered ending their lives. She continues,” I believe it would be dangerous to offer assisted suicide as an option in the place of good holistic support. And yet it is exactly this sort of support that gets people through their dark days and difficult patches.” 

John concludes, “As an adult I’m a much different person now and in some ways a much less able person. But I’m still here and still open to goodness and kindness. I’m still able to say my life is valid and meaningful to the people that I love and to my country. That’s what I want for everybody.”

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