The Supreme Court of Canada has struck down euthanasia laws, paving way for euthanasia and assisted suicide laws to be established by Canada’s Federal government. They have a year to do this, which is hardly what I would consider enough time to establish a loophole free framework for the deliberate ending of someone’s life. I’ve been trying to express my thoughts and opinions on this, but it’s been hard. I mean, it should come as little surprise that I am against euthanasia and assisted suicide, however my reasons are for very personal reasons, so personal that for once in my life I am having difficulties expressing myself. Some of these reasons and feelings are encapsulated by the photo you will see next:
You may wonder why all you can see of the adult male is his eyes. It’s because I have a disability; photosensitvity. I’m allergic to ultra-violet light, which includes the sun. I am literally allergic to the very object that sustains life on this planet. This goes beyond wearing sunscreen, sunscreen does not protect me – I need specific clothing to protect myself, and even then it is only for a certain duration – after awhile the clothes are no longer effective. It only takes a minute or less for a reaction without said clothing, and that does not include sensory input like the eyes.
It took a bit for me to come to grips with things, but my friend Christina (who has spina bifida) told me that because I need accommodation, special equipment, and a doctor’s note saying I can’t go outside for prolonged stretches – yes I am disabled. And strangely, at that time I embraced it and thought to myself “I’m not defined by this”. I felt human again, because for awhile I did not.
To add to that, there’s not a day in my life that I have felt no pain. I’m 33 years old with a body that is twice that age. I have at least one auto-immune disease (full blown Raynoud’s Disease), possibly a second – and with that comes a compromised immune system. Chronic joint pain throughout my body (including both hands), some days it feels like my body has been run through a meat grinder. Nerve damage in my spine, which leads to pain shooting down my left side, making me at times unable to sit or walk. I’m immune to morphine and any painkillers less than that (it only diminishes fevers). When I do get fevers, my Raynoud’s Diease triggers – leading to temperatures of over 104 degrees regularly. I’ve started zopiclone, and that has no impact either – still getting three hours or less sleep a night while using a CPAP machine. On top of all of that; I was diagnosed with ADHD years ago. A mind that races faster than others, a body that wants to move. And a body that cannot accommodate. Even now while typing, this is painful.
There are days that I question my future. I love being alive, but my mind reaches a dark place sometimes. There’s been no answers yet for my problems. And several of my conditions will not get better when I get older. Joint pain does not get cured. Autoimmune diseases do not get cured. I will spend the rest of my life receiving looks from people wondering why my entire body is covered (some have thought I looked like a terrorist). I live in Canada, having Raynoud’s is not ideal – prolonged exposure to cold devastates my body, to the point where I could lose limbs.
What I want is not this law, I want better care. I want more research. I want to see tax breaks so I can buy more clothes that will help me live my life with more freedom – UPF 50+ clothes are my version of a wheelchair, but I pay 100% out of pocket for them. I want palliative care. I do not want death to be an option for a couple of reasons:
1) I do not want, during sustained dark periods, to consider dying when in my more cognitive moments it should be otherwise.
2) I do not want to feel pressured into ending my life because my quality of life suffers.
3) That disabilities were specifically mentioned along with the terminally ill, it makes me feel as if that my disability is a death sentence.
4) “I felt human again, because for awhile I did not” – I said this before. This law, this law makes me question that again. I do not want, under any circumstances, to have my life deemed not as worthy of living as an able bodied person. Because there’s no law for them, is there? No, this is a law for all of us “abnormals”. The “normals” get suicide prevention hotlines and references to mental health resources, we get a law saying “we’ll help you die”.
For them, it’s a tragedy. For us, it’s a privilege.
Can you imagine someone using resources like the aforementioned hotline and be told “go head, end your life”? We’ve all been told that would be a terrible thing to say. Highly unprofessional. Now, with this ruling, apparently when us abnormals call a phone line we get an option to simply “go away”.
Outside of the physical issues, and there’s the mental. My wife has clinical depression, and there has certainly been times in her life where there was a sustained period that she would have made use of assisted suicide, because her brain was thinking distorted thoughts (in fact, she said this to me yesterday). The “what-ifs” in that situation are nearly incalculable, but the tangible ones is that I wouldn’t have a wife or son, and without someone by my side who’s to say of my own mental outlook. There are many more like her, all they need is treatment. But this ruling makes no distinctions, it says things like “that the prohibition on physician-assisted dying deprives competent adults, who suffer a grievous and irremediable medical condition that causes the person to endure physical or psychological suffering that is intolerable to that person, of their right to life, liberty and security of the person under”. Not seeing anywhere in that paragraph where it says that the psychological suffering is brought about by physical means, which is frightening – it means it is well within the Government’s power to say that those with a mental illness can end their lives, when if their synapses were firing and they were getting treatment they would not choose this.
We just finished #BellLetsTalk, which sent out a positive message, and hope for those with mental illness. Saying not to give up, that life is worth living. Now those with “intolerable mental suffering” will soon be able to have their lives ended – sending the exact opposite message. This saddens me greatly, that all of the efforts to have people think and feel that they *can* live full lives, only to be given an option where they can escape things permanently.
Finally, there’s a huge concern that myself and others have; simply put, it’s cheaper to end someone’s suffering than it is to keep them alive. It won’t start off like this, but what if there is funding cuts because it’s just easier to end the suffering of the disabled and mentally ill? It won’t start this way, but it is a concerned shared by myself and others. It sounds drastic, but make no mistake; our lives are already drastic. We already feel marginalized, we feel neglected. We feel helpless. That legalized assisted death is an option for us and not the “normals”, of course our minds will race.
Which is why when during the course of conversations about this topic, when people will eventually say that they only want euthanasia and assisted suicide to be available for the terminally ill, I still have concerns – the previous paragraph is applicable to them, we could see palliative care erode because it’s easier for them to simply die. And lets be real; it’s not just going to be for the terminally ill. We’ve seen that in Belgium (chronically ill children can now request to be electively terminated), which we can look at as a case study (my wife found this link, which shows several alarming trends there). We see that the Supreme Court obviously has a broad range of individuals in mind. Once the door opens, how hard would it be to challenge the law in court to have the laws be applicable to them? And overall, it contributes to the continued devaluing of human life, where life is disposable.
I’m aware that for some, they want this choice available. They feel this choice is necessary for certain people, and that there’s free choice involved. But we can see this in Belgium, where people are being put down without consent. We can see this already in some cases where there are court cases, injunctions, and family fights over whether to keep feeding tubes or cables plugged in. We see insurance companies fight and scrap over the tiniest claims – imagine the fights for long-term expenses when the choice is there to self-terminate. And to some, because this is an option, they will view this as there being no choice at all. Either through distorted thinking, through being convinced by others, they’ll feel a responsibility and an obligation to end their own lives.
There’s something else, something that I may revisit later when after I reflect more on it. At this point it could be me over-reaching, but for the time being I’ll place here for further pondering – eugenics and bioethics. I talk a bit about it here, how some choices people make could have negative ramifications as it pertains to specific demographics of our population. We already have screening for certain disabilities, with the choice to terminate the unborn child based on said disability. With specific mention of people with disabilities and mental duress, could we end up going in a similar direction but on the opposite side of the age spectrum – where some are terminated solely based on a disability? It certainly makes it seem like there’s a stigma before birth and near the alleged end of life. Although again, perhaps I am reaching too far with this last portion.
I’m going to finish this for now, my hands have reached the point where I can no longer type. There’s more I may add later, or not. Who knows. For now, I’m going to go stare out the window and enjoy the “beautiful” Ottawa skies. These skies that are currently bleak, dreary, an everlasting grey canvas – which are my haven and salvation when it is between 8 – 24 degrees Celsius.
If only it wasn’t cold, maybe I could enjoy the outdoors for a couple of minutes with my son like a normal father could.
Thank you for sharing this, and God bless you.
Thank you for reading (and commenting)!
Thank you for this post. Is the photosensitivity you live with also referred to as “sun-sickness/allergy”? If so then it would explain my and my father’s very mild situation. My father was told to stay in and wear sunscreen, though he still couldn’t be out more than 15 minutes without getting a rash and feeling sick.
I used to call it a sun allergy, until I noticed it’s UV light in general that causes reactions (photographer lights, incandescent lights, florescent lights – really it’s any light that emits ultraviolet rays). It sounds like your father has something similar.
There’s a website called “Coolibar” that may be of interest to him, they sell UPF 50 clothing. It’s expensive, but it’s allowed me to have a little bit of freedom (at the expense of looking like the photo above – and I still can’t stay outside for prolonged periods).
Very personal conviction. People need to see real lives being affected by ethical decisions.
Thank you for commenting, Alana. So far people are justifying this by looking at only one portion of the population – while ignoring that a large swath of folks were included in the ruling. Hopefully people will be able to see the greater ramifications of this.