Presumption

   

Every now and again the universe conspires and lets me know without prevarication that I'm supposed to write about something. It started when I (somewhat belatedly) read Dave's post about World Down Syndrome Day, which had a lively and at times disturbing conversation in the comment section. A discussion which included responses to a comment that sounded awfully as if the person advocated aborting a fetus with Down Syndrome and other questions about the suffering brought into this world if you "purposefully create people with DS.” That is, the suffering experienced by such people (and note that is relevant for my post is that none of the people who left such comments appeared to have DS themselves). Shortly after that there was much discussion about the perceived lack of worth and some fairly heated comments that you can go read for yourself. I percolated on that for a little bit, thinking I'd write about it later.

And then last week, I saw this. It is a letter from Laurie Larson, the President of the Canadian Association for Community Living containing a formal complaint about a program aired on Global Television. It was a report on 16x9, a news magazine show, featuring "advocates who wish to change Canadian law in order to allow them to end the lives of their sons and daughters with disabilities." Because medical science prevents “the law of nature” from taking its course, “the law of a nation” keeping them alive. Because the parents can’t believe they’d want to stay alive. Robert Latimer was on - no surprise as he is the darling of this particular movement (see why here). The program included a panel discussion composed entirely of these advocates, with no dissenting opinion from people with disabilities or families of children with disabilities who disagreed with this position. By the way, please spread that letter from Ms. Larson on every social media platform you can find. We need people to get up in arms about this. If you have the stomach for it, you can see the 16x9 story here (the Taking Mercy link)

And that's what did it. That's what made all the wheels in my brain click into place with a need to respond.

I am one of those children who these “advocates” might have recommended to be killed. After all, it is cruel to sentence a child to live with a severe systemic illness that causes constant pain, left me in hospital for years when I was growing up and twice has required medical science to prevent nature from taking its course (come to think of it and continues to do so, every day). An illness which necessitates I get help from professional caregivers to go to the washroom, take a shower, dress and all the other little minutia that everybody else can do for themselves. Because that's a horrible life, right? It is a life of suffering and dependence and must therefore be beyond bearing.

I have heard this so many times throughout my four decades of living with a chronic illness and disability. It is expressed in pity, in admiration, in exclamations about how brave and courageous I am, statements about how the person speaking could never do what I'm doing and sometimes, they get brutally honest and say what they really mean. That if they lost the use of their legs, they would kill themselves.

Usually, I am somewhat of a smartass, saying that they have no imagination and jump on the opportunity as yet another educational moment. But today is not one of those days. Because today I am not in the mood to educate or jolly someone along to understanding. Today I will say this to these people of limited imaginations:

How dare you presume to decide what makes life worthwhile? How dare you say that because this person can't walk, that person has an intellectual disability and the one over there lives with chronic pain, their lives are not worthy of being lived? Who are you to judge? By making these statements, you have proven yourself to not have the capacity to imagine a situation other than perfect health and therefore you cannot be trusted to make decisions about anyone else's life.

I'm sure someone would argue that my friend Beth is living through something so hard that it is impossible to imagine wanting to keep going. She lives with intense daily pain, brain damage that means she can't remember what happened three days ago and daily strokes or seizures. Yet she fights to not just get through each day, but to live every minute that she can and right now, she's at Sakura-Con.

One of my attendants told me a story of a client at her other job. She works in a supportive setting for people will multiple complicated disabilities, all of them wheelchair users and nonverbal to various extents. One of her clients likes to go to The Ex, an annual fair that invades Toronto three weeks every August. Once dressed for the morning, she takes the regular accessible bus and boots around the fairgrounds until late at night, managing to buy food and find someone to feed her. Every year for the first week or so, the staff will get calls from concerned police officers who are worried about the poor girl who can’t talk being all alone. Staff will then have to explain about a concept called "the dignity of choice" an eventually they stop calling. I'm sure someone would argue that this woman’s life is a horrible one, but she doesn't seem to know that.

Just because you can’t imagine living with chronic pain doesn’t mean someone else won't be able to be a productive member of society. Just because you can't imagine being happy if you didn't have a normal IQ doesn't mean someone else in that situation can't be joyful. Just because you can't imagine living with legs that don't work doesn't mean someone else can't create a meaningful life from a seated view.

None of us are living happy lives "despite" our circumstances, imagined to be so terrible. We have adapted and got on with life just the way we are. And I will say another thing to these people of limited imaginations: I feel sorry that your view of life is so narrow and so damaged that you look at us and see nothing but can’t. See nothing but horror. So here we sit, both of us feeling sorry for the other and that's fine. We have a right to differing opinions. But I am not arguing that you should be killed because of your limitations. You, on the other hand, are arguing that people who are not like you should be. And it reminds me of how the Nazis started: with killing people with disabilities and calling it "mercy."

And you could argue that this is an isolated case, that Tracy Latimer was just a girl who had a lot of challenges and many of them very painful. That Janet and Jeffrey Corriveau are far beyond what most of us would consider quality of life. And every time I mention feeling threatened. by talk such as this, someone will tell me that I don't have to worry, I suppose because of my IQ or because I have enough people around me who will protect me. But here's the thing: where does it stop? If it is okay to kill Tracy or Janet or Jeffrey, at which point does it become okay to not give a girl with DownSyndrome a kidney transplant? And what if it were a heart transplant, would it be okay to withhold that, too? And then what about people like me?

In the 16x9 report, Annette Corriveau says that she believes if her children had a choice, they would use suicide. That she cannot imagine anyone wanting to live like this. And that is the problem right there. Because it is about her judgment of what makes a good life. The Latimer case was about Robert Latimer’s judgment of the value of his daughter's life. The "Canadian public opinion" that is quoted in the 16x9 report as agreeing wholeheartedly with him is also the judgment of the able-bodied people of "normal" intelligence. And out there, not too far away, someone looks at me and thinks that if what has happened to me happened to them, they would kill themselves.

Where do you draw the line? Who draws it? And how is it not inevitably a presumption about the worth of a life that no one not living it can imagine? There is a reason we have laws protecting people - especially vulnerable people - from the consequences of the judgments of others. Because the court of public opinion cannot always be trusted one of my favorite examples of this is that when interracial marriage was made legal in the US, 70% of the population disagreed with it. Someone - supposedly Gandhi - once said that you can judge a society by how it treats its most vulnerable. To my mind, believing you have no right to make a decision on behalf of others when you cannot imagine how they feel would be a good place to start.