More Questions Than Answers

I was talking to friend about euthanasia the other day - yes, I know, we have such uplifting talks ‘round here. We were in wholehearted agreement about the barbarism that is our ability to, when the end is inevitable and filled with suffering, help an animal to a dignified, painless end, but not do the same for people, should they wish it, because… I dunno, human suffering is noble and useful before death? And then the subject turned to Robert Latimer and things got a little hairy.

Fourteen years ago, Latimer killed his severely disabled daughter Tracy and last week, his parole application was denied. And I will come right out and say that I rejoiced when I heard that, because I think what he did was wrong with a capital W, because no one has the right to "help" someone die who isn’t capable of asking for that help. My friend is a parent and believes that although the rules may say that what he did was wrong, it is quite possible that in this particular context, it may have been right. So right off the bat, we were on completely different sides in the debate but she did challenge me to think about why I thought only people who can articulate their wish to end their suffering should get to do so. And when I spoke of the dangerous precedent, of the devaluing of life that already occurs with disability, of the slippery slope and how cases like Tracy, Ashley, Katie and Ruben frighten me to no end, she mentioned that it wouldn't happen to me. That I am not in danger of someone deciding that my life is not worth living and taking actions to end it.

Every time I post about cases like this, someone will say that I don't have to worry about it, that I am safe and I appreciate the sentiment behind that, I really do. And I know I am safe, because I am cognitively "normal", can articulate my desires and I have loving friends and family who will be an extra layer of protection to advocate for my rights. But the truth of that sentiment is exactly my point, because my second line of defense is a very real reliance on others to advocate for me. How many non-disabled people do you know who need that extra protection against being medically modified or “helped” to end their lives? And what happens to the disabled person who doesn't have resourceful people who will fight tooth and nail for them to have the same rights as everyone else?

Aside from our developmental stage, what is the difference between me and Tracy Latimer? What makes it okay to help her escape her chronic pain and not me, who also has chronic pain? Was her life a living hell or did it balance the pain with joy? And if the answer is that we can never know for sure if all possibilities to help her had been exhausted and will never know what she would have wanted, how can it be right to "give her peace"? What kind of assumptions do you have to make in such a case and is it okay to make a decision like that based on assumptions? Who gets to decide? Her parents? Can you assume that all parents will come from a position of altruism and objectivity, that they will not be affected by years of exhausting around-the-clock care or by the heartbreak of watching a child in pain? So you'd need some sort of official body to make the decision but again, who gets to decide? Say the cut-off for approval to euthanize or medically modify someone is decided to be a developmental stage of three months, like Tracy and Ashley. All laws breathe and live and evolve, because societies evolve and something like this would therefore naturally evolve as cases were brought before this hypothetical Board.

First, doctors in Seattle believed it was okay too stunt Ashley's growth and not even a year later, doctors in Britain thought it was okay to do the same to Katie. There is a progression once a precedent has been set. The more of my neighbours who recycle, the more likely I am to recycle, because it has become the norm. There will be another Ashley or Katie and soon. If you listen to the debate, you will hear how many people are of the opinion that individuals similar to these girls don't have the same rights as someone who is ablebodied (or not developmentally delayed), opinions that range from segregation to different standards for medical interference (in the Times article about Katie, they made sure to specify that “[t]he treatments … would not be carried out on able-bodied people"), to stating that kids like this - and these particular paragons of humanity call the kids charming things like 'turnips' - should be killed at birth. Laws evolve because societies evolve. Or sometimes societies devolve and can you seriously guarantee that if it’s okay to alter/kill someone who will never grow older than three months, the line wouldn't be pushed to four months, then five and what then? Do you stop at a certain level of a developmental delay or do you not stop until there is no cognitive involvement? How do you assess the cognitive ability of someone who can't communicate? People who in the past would have been considered "killable" under such a law now have the communication technology that enables the rest of us to find out just how many of them have something to say. And what about pain? Can you guarantee me that someday someone isn't going to tell people like my parents who have a child with arthritis, that the only way to ease the suffering is to amputate the wrist that is causing such pain or because there is no cure, that the most loving thing they can do is do “give her/him peace”?

What is worse – not "helping" someone who should have been allowed to die or "helping" someone who should not have died? And who decides what qualifies as 'should'? Who decides what qualifies as intolerable pain - the norm, i.e., most people?

The thing that makes me feel sick inside is that part of me can see that it is possible Ashley might have a higher quality of life now that she will never grow any bigger. Or that it is conceivable that Tracy's life had so little quality that in this particular case, it may have been okay. Because I look at these girls from my cozy existence, these girls who have profound disabilities and think it must be a pretty awful life and if it were me, I might want that intervention or that final exit that would stop the pain. But what stops me in my tracks each time my mind goes even near that path is that there are many people out there who look at me and say that mine is a pretty awful life, what with the wheelchair, the chronic pain, massive amounts of medication and attendant side effects, barriers, limitations, etc., and those people honestly feel that if they were me, they wouldn't want to live. So according to some, I could certainly qualify for this program of mercy.

And that's why cases like Tracy, Ashley, Katie and Ruben terrify me. Because we are not so different after all.

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