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.



Chrissy said…
Lene, as always, I love you! Thank you for putting into words exactly what I feel without being able to articulate it.

I too hate it when people say "you are so brave". I want to slap them and say no I'm not. I'm no braver than anyone. I just get out of bed each morning like everyone else and face the day. It is the implication that somehow I am more worthy because I live with chronic pain. It becomes so you are either a saint or a burden or both. I don't like being seen as anything other than a person getting through my life in the best way I can. I don't need anyone else's ideas about my reality to colour how I live my life.
Carol Garnier said…
Lene, I wish everyone would read what you had to say here. It is all so true. And who knows if the "so-called" normal baby will grow up to have any number of disabilities, caused from accidents, injuries etc. What then? Do we kill them off so we don't have to take care of them? Keep on telling them.
Anonymous said…
Great post however out of respect for the 6 million Jews who died at the hands of Nazi policy known as the "final Solution" at the death factories such as auschwitz and treblinka as part of their ethnic cleansing policy. Lets not reinvent historical facts but rather tell it like it was. The Holocaust did not begin with the murder of the disabled but rather Nazi's began their policy with the following steps
On April 1, 1933, the Nazis instigated their first action against German Jews by announcing a boycott of all Jewish-run businesses. Then came the The Nuremberg Laws, issued on September 15, 1935, began to exclude Jews from public life. The Nuremberg Laws included a law that stripped German Jews of their citizenship and a law that prohibited marriages and extramarital sex between Jews and Germans. The Nuremberg Laws set the legal precedent for further anti-Jewish legislation.
Nazis then issued additional anti-Jews laws over the next several years. For example, some of these laws excluded Jews from places like parks, fired them from civil service jobs (i.e. government jobs), made Jews register their property, and prevented Jewish doctors from working on anyone other than Jewish patients.
During the night of November 9-10, 1938, Nazis incited a pogrom against Jews in Austria and Germany in what has been termed, "Kristallnacht" ("Night of Broken Glass"). This night of violence included the pillaging and burning of synagogues, breaking the windows of Jewish-owned businesses, the looting of these stores, and many Jews were physically attacked. Also, approximately 30,000 Jews were arrested and sent to concentration camps.
After World War II started in 1939, the Nazis began ordering Jews to wear a yellow Star of David on their clothing so that Jews could be easily recognized and targeted. Its all well documented
That is not so say the disabled were not persecuted and even murdered but there was no official campaign launched by the Nazis that was publicly announced as there was for the Jews to do so and it was not how the Holocaust began with the direct targeting of the disabled. Just to not undermine an equally terrible struggle.
AlisonH said…
You just said that better than anyone else I have ever heard or read. Thank you does not begin to express how I am feeling right now. Your message is so profoundly needed out there.

A few years ago I ran into an old friend I hadn't seen in some time and she had a three year old I hadn't met nor heard of--and he had Down's. She told me almost apologetically, flinching I'm sure at all the things people had stupidly said to her.

I quite surprised her when my immediate reaction was to exclaim, "Oh COOL!!!"

Because people with Down's are the most loving people on the planet. They are utterly nonjudgmental, and they bless and bring out the best in everyone around them.

There are many people who live in fear--though they don't realize it--of that which they don't know, of raising a child who is different. If they only knew.

Thirty years ago, I used to occasionally watch a little boy so that his mother could keep her job as a nurse to keep his needed medical coverage. He had a different chromosomal abnormality than Down's, but along the same lines only more handicapped.

I was a better person for having been around him and I will forever love him and am grateful for what I learned from the experience.
Lene said…
Anonymous - I am by no means arguing well-established facts about the Nazi persecution of Jews and when that began. I am, however, quoting equally well-established facts that the killing of people deemed "inferior" started with the disabled.

After reading your comment I re-read what I wrote and realized the term Holocaust was specific to the persecution of Jews. I'd (apparently mistakenly) believed it to mean the killing of everyone the Nazis thought unworthy of life, including people with disabilities, gypsies, homosexuals, communists, etc. I have edited the text to be a clearer reflected of what I intended to say.

Thanks for your comment!
Anonymous said…
Thank you so much for articulating this. I've been worried, terrified and enraged by the aspect of culture that perceives those of us with disabilities as disposable for quite some time. In my mind this is partially due to the idea that disabled people are somehow less than human. For example, I have a memory of being about five years old. My mother was carrying me from my kindergarten class and I was wearing any number of splints and braces. A mother of one of the other students came up to us and said, "you should have just let her die." the thing is, my life was never in danger from J.R.A. And, in fact it has been quite a fulfilling and happy life.
The fact that we live in a society where individuals and institutions can perceive a rather large group of the population as subhuman enoght as to be better off dead is so appalling that I get flustered just thinking about it. Thank you so much for your beautiful post.
woolywoman said…
So true. My latest reply, when told that I was so brave blah blah blah was "you manage to enjoy life, and you're an idiot" By which i did not mean intellectually disabled. There are days I just don't feel like educating people.

I know that a more constructive, educated an educating response is the better way to go, i just don't always feel like it.

Glad that you are able to be more coherent on this issue than I!
I am less patient than you, as it is not close to one decade, much less four and I tire of people who decide what life is and is not worth living. "How would you know?" I say, "You aren't the one living it."
Diana Troldahl said…
Thank you so much Lene. You read my heart. I have felt such anger toward those people who are making judgements 'praising' my 'fortitude' and have had a difficult time pinning down the source of my anger. You have encapsulated it.
Deborah Robson said…
Diana Troldahl referred me to your post. I'm very glad she did.

My daughter's very best friend in the world was Teague Johnson. Teague had cerebral palsy. He used assisted communication, among other types of facilitation. He was one of the brightest, funniest, smartest, kindest people we have ever known. His body did not last long enough for our liking; he left us when he was 12. His spirit lives on in our hearts.

Teague knew about, and wrote a piece for the Vancouver Sun on, the Latimer case.

Teague was a light in our lives, in so many ways. I'm not counting, but I think it's been sixteen years since we last "talked" with him on the phone (with his foster mom speaking the words he communicated to her). I miss him so much. I'm not sure I can live up to the example he set for how to live, but I work on it daily.

As usual, Teague said it better than I can. Check out that link for his perspective.
Don Meyer said…
Better said than I could have. I'm an old man - try 81 - and have been handicapped for the past 25+ years, so I know the difference between healthy, and not so healthy. I have news for those who want to 'cleanse' the world: I feel more productive, and have had a better over-all life after my injury!
Anonymous said…
I avoided watching this report. Not interested in getting all riled up about it. (Not saying it's not worth getting riled up about - just that I don't want to).
The problem I frequently have with any reports about this kind of thing is that they tend to talk about assisted suicide and 'mercy killing'.
And to me, they're totally different. One is someone making a decision for themselves, and one is someone making the decision for someone else.
And while I despise the idea of people killing their children because they think it's 'best', I also get frustrated that people then extend the idea that somehow doctors will start prescribing suicide to patients with serious health problems.
Gina @ Inky Ed! said…
Thank you!
my 10yo son with multiple, severe disabilities is able to communicate that 'he loves his life'... you are right - how dare anyone suggest his life isn't worth it.

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