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A deadly double standard – Claire's Story #DefendNZ Documentary 2

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

Claire broke her C5 and C6 neck vertebrae in a car accident at the age of 17 and became a tetraplegic. Unsuccessful neck surgery caused further losses of mobility. While her condition is currently stable, complications may arise at any time that would reduce her capability even further. Her disability involves spasms and nerve pain that could be regarded as unbearable. She is also susceptible to lung, urinary and pressure sore infections that can be life-threatening if not managed well, and she needs regular assistance with bladder and bowel management to stay alive.

Many medical professionals would agree that Claire’s disability is a “grievous and irremediable medical condition”, and that she is “in an advanced state of irreversible decline in capability”. In addition, should eligibility be limited to terminal illness, Claire could readily become terminal (and thus eligible under that criteria) by refusing life-sustaining cares and medical treatment. Such scenarios occur regularly in the US state of Oregon, where assisted suicide is available only to terminally ill people with six months or less to live, but applied as meaning six months or less to live without medical treatment.

A deadly double standard – Claire’s Story

Claire grew up in Whangarei, with her parents, two sisters, great friends and weekends at the beach. “We had an idyllic childhood”, she says. The future looked bright. At only seventeen, Claire applied for entry into various design schools. But en route to one in Auckland, her life was changed forever.

That day she ran to the car in which her mum was already waiting. She remembers thinking, “I need to run more”. Ironically, about an hour later her mum fell asleep at the wheel. Within seconds the car went off the road and flipped upside down. She remembered how worried her sister was and realised that her condition was serious when she was airlifted to Auckland Hospital. Scans confirmed she fractured her C5 and C6 vertebrae, leaving her paralysed from the neck down: she would never walk again, let alone run.

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Claire recalls, “I couldn’t imagine living my life in a wheelchair or not having the use of my arms and hands. So I think I was in disbelief and denial for an awfully long time.”

“I’d have friends come and visit me and everyone was sort of saying ‘get well’, ‘you’ll be okay’, ‘you’ll be walking’. We just assumed that it would get better… but it didn’t.”

After seven months in hospital Claire moved to Wellington to study design, despite her physical limitations. But just before starting her degree she spiralled into dark depression. The pressure of having to navigate her way alone through everything that came with her disability left her feeling very isolated. She felt that she had no one to talk to and that nobody really understood what she was going through. “All the grief and anger that I felt, I just bottled it up,” she says.

About 18 months after the accident Claire visited her dad in Whangarei for the first time. Overwhelmed by memories of the accident, she she set out into the bush by herself and tried to overdose on pills. Fortunately, some people on a nearby bush walk found her and rushed her to hospital. She was already in a coma. Claire remembers waking up two weeks later, angry at being alive.

Claire discovered that she could compensate for her lack of hand movement by using both her hands or her mouth. “You know, you just find ways of doing things and that’s what I did. I realised that I could adapt to anything really and if I could do a design degree without any hand movement then I could really achieve a lot. That gave me a big confidence boost.”

After graduating she was delighted to land a design job in Christchurch that eventually became full-time. She loved it. However, when the earthquakes hit, Claire’s world was shaken once more, bringing to the surface her unresolved emotions from the accident.

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She had nightmares about the earthquakes and stopped sleeping. Then she tried to dull the pain by working and studying even harder, but just became increasingly exhausted. Once again Claire found herself in a dark place. She just wanted the world to stop.

She attempted suicide on three more occasions and each time she ended up in hospital in a coma. Her body was clearly not ready to give up – even if her mind was.

Determined to find a way to successfully end her life, she started to talk about assisted suicide. A psychologist and a psychiatrist at the suicide outreach clinic validated her suicidal desires and both suggested that she explored assisted suicide in Switzerland. As a high-level tetraplegic she was considered a good candidate. Claire remembers, “All they saw was my disability. They didn’t ask me about my lifestyle or my coping mechanisms. It was just, ‘She’s got a broken neck. She can’t move. Why would she want to live?’”

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When Claire talked to her family and friends about her interest in assisted suicide they disapproved, but most became more accepting of the idea after the medical professionals gave it validity.

“So instead of committing suicide which seemed like a tragedy, assisted suicide didn’t seem so bad, because it was somebody helping me and it was controlled by the medical profession. And that’s not really something that you can argue with, and certainly, you know. you can’t argue with my broken neck which I was using as an excuse.”

“What I didn’t realise was that it wasn’t my broken neck that was the problem. It was my lifestyle and my coping mechanisms.”

She had convinced herself that death was what she wanted and that it was something others agreed with also. “I guess I felt like a burden on society, on my friends and on my family. None of them expressed this idea to me overtly, but I just didn’t feel like I was of any value to anyone.”

“I’d convince them that I was in an awful lot of pain, that I was suffering. Actually, I just wasn’t facing the reality of the situation which was the fact that I was completely exhausted, overworked and traumatised. But you know, assisted suicide legitimises death and legitimises suicide. And I pretty much had most people in my life on board with my decision to end my life overseas, because it was something that the law had permitted and that made it okay.”

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Then an unexpected turn of events followed. She was scheduled to have surgery to stabilise the metal work in her neck. It went really badly. Claire needed to have a screw inserted into her spine and in the process her spinal cord suffered additional damage. Because she lost movement in her triceps and wrists, she also lost her job and career. She was more disabled and in more pain than she had ever been. Physically she was at her lowest point.  

Because she had to stop working and had to put everything on hold, she was finally able to rest. The more she rested, the more she slept. She started to reflect on her lifestyle.

A turning point was when she read a book by Barbara Gibson on quality of life. Claire realised, “My problems weren’t physical problems as such. It wasn’t my disability that was the problem. It was all the stuff that was manifesting in my head. It was my coping strategy of being busy. I was overwhelmed and I couldn’t cope.”

My pain was more related to my psychological state than my physical state. It manifested in a physical way, but it manifested more because I was so tired, because I was stressed. I was exhausted. I was traumatised from the earthquakes.

For twenty years, and until only three years ago, Claire was an ardent supporter of euthanasia and assisted suicide and wished these were legally available in New Zealand. “In hindsight,” she explains, “I wanted assisted suicide because I wasn’t coping with my life. Now that I’ve put the support in place, I love my life.

I’m so glad that assisted suicide wasn’t available in New Zealand, because if it were, I wouldn’t be here today. That’s scary for me.

Claire is convinced that assisted suicide is simply another form of suicide. Depression led her to attempt suicide four times, and it was depression that led her to consider assisted suicide overseas. In both cases the cause and the need were the same. She ponders, “The irony is that we don’t agree with suicide. We’re fighting against our incredibly high rates of suicide and yet at the same time we are saying that assisted suicide is okay. But what’s the difference? How is assisted suicide any different to suicide?”

Claire spoke to a man in the Netherlands whose mother had euthanasia following a relationship break-up which had left her feeling depressed. The first he heard of his mother’s plans was when he received her death certificate. “This man is traumatised,” Claire reports. He had no opportunity to help his struggling mother or to say goodbye.

Claire is concerned about the fact that euthanasia laws allow a person to request lethal drugs without discussing such a momentous decision with their family. “This Bill feeds into the individualistic culture that the majority of New Zealanders have,” she argues.

Claire takes pride in being a member of Ngāpuhi, the Māori heritage on her father’s side. “Māori are about whānau, about the collective, and about making decisions as a group. This Bill negates a lot of those indigenous ideas and values that we hold.”

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Having travelled extensively, she noticed that in other countries people offer to help her with her wheelchair, but that it doesn’t happen in New Zealand, even though it is often hard for disabled Kiwis to access transport and buildings. Claire also identified a staunch culture of independence in her home country. “The underlying message is that if you’re not independent, you’re not of value. This puts an enormous amount of stress on someone who can’t be independent anymore.” The emphasis on individual independence contributes to people feeling isolated, vulnerable and without support.

“I find it really disheartening that euthanasia is being presented as an option, because we’re better than that. We’re Kiwis. We’re about kindness. We’re about love. We’re about unity. This Bill suggests otherwise. It says to people who are seriously ill or disabled that they’re of less value.”

“Instead of saying, ‘Here’s the option for assisted suicide’, we need to offer them support, love and a sense of value,” she recommends.

“Even the simple fact of being presented with the options made possible by this Bill as an idea for me to consider immediately devalues my life. Straight away it makes me feel that if a health professional is providing this to me as an option, then maybe they have got a point. You know, we put doctors on a pedestal. We believe them. We trust them.”

Claire reckons many people, including many medical professionals, are afraid of paralysis and a loss of dignity – of a life like hers. They are afraid of the unknown. They fear the disability that so often accompanies serious illness and assume that a person with a significant disability would have poor good quality of life. “The reality is that with the right support I now have a great quality of life and I can do just about anything that anyone else can do. I just do it a bit differently, and actually, I’m okay with that now.”

“I look at my life now, at how rich it is, and I look at all the experiences I’ve been given. I’ve got a great life. I love my life and I’m really glad I’m here.” She has travelled to Milan to model on the catwalk in her wheelchair. Her blog and social media accounts have a large following. She lives in a house that she designed herself and is in a fulfilling relationship with a supportive partner. She is doing a PhD in disability issues and continues to mentor a support group.

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“The one thing that came out of being so active on social media,” Claire says, “is that I became aware that people who are different, people who are disabled, people who have been through trauma… they are desperate to be heard. They don’t want to feel alone or isolated. And I do feel that this Bill isolates people.”

She says, “I’m trying to teach people that there’s more to life than one’s disability. Disability is actually a positive, because it gives you skills and experiences you wouldn’t have had otherwise.”

She still goes through ups and downs and sometimes misses her life before the accident, but she makes a point of not dwelling on what’s been. She has learnt to create a life that’s enjoyable and fulfilling. “Mindset is the major player,” she says.

“I’m very humbled when I hear other people’s stories and especially about how much I’ve been able to influence them. You know, it makes me feel really good. It also makes me feel that maybe I still have a lot more to contribute to this world.”

The woman who once wanted her life to stop, has become unstoppable.

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