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Errantry: Novak's Journal
...Words to cast/My feelings into sculpted thoughts/To make some wisdom last
Personal/Theological Notebook: Thinking About Aunt Rita's Funeral 
14th-May-2009 05:09 pm
Tetons and Me
It's been a week since my aunt Rita's funeral this past Thursday, the earliest that all the siblings could be gathered after she passed away in March. As I mentioned then, there was a certain tragedy in Rita's life as she had been a victim of PKU before the disease was understood and could be resisted. We gathered at Saint Francis of Assisi Catholic Church in Belleville, Wisconsin, where we were served admirably by the pastor, Fr. Ken Klink. Mom, Aunts Pat, Kay and Helen, and Uncle Bill were joined by my cousins Jane, Joel, Ann, her husband Scott, and me, on what was an ideal warm spring day. What was also especially cool was three women who took care of Rita at the state institution where she lived also attended. Rita was a toddler her whole life, and she was one that it was easy to dote on, in the way I've doted over my nieces in turn when they went through that stage of their lives. Even in the one time I met her, I could see she was prone to laugh, and knew some words – that she was willing to engage you, in contrast to my Uncle Tommy, whose development seems even more limited.

So there were stories and images that were new to me: Rita as a six year-old, still living on the family farm, and apparently loving nothing more than working open the gate on the yard – wired shut for her sake – and taking off laughing across the fields, with the family, completely alarmed, having to scatter to find her; that she liked to help the staff make beds on their morning rounds; that her favourite movie, for reasons no one will ever know, was Tyler Perry's Diary of a Mad Black Woman, which she would laugh her way through, over and over again. I've never seen it, but it's on my list now.

Given the kind of work I do, I also couldn't help but consider her life in other contexts, and in those ways to consider her life's meaning in our day. Despite the severe disability, I was struck by how much her life was still a good thing: worthwhile to her and of value to those who knew her. I just hear so much – particularly in that I'm around ethicists quite frequently and around people who take a strong interest in ethical issues – about people and governments arguing that it is an act of love and of mercy to euthanize or abort children whose lives "wouldn't be worth living." I suspect that it was more honest in the 1930s when it was cast in the language of Social Darwinism as getting rid of society's "undesirables." Rarely have human beings risen to heights of the doublespeak involved in using words like "love" and "mercy" instead of saying "I would find it painful, difficult or time-consuming to raise my child with Down's Syndrome." I know there were many ways in which Rita's life wasn't easy, nor was it easy for her family to have children who suffered from such disabilities. I sometimes wonder if I've been raised in an age where people expect ease of life to be a right of theirs, because it seems that that expectation drives so much of those particular ethical situations or debates. And I wonder, if it's true that we do have such expectations, why that's the case, because I don't know that anyone has ever actually had a life that was purely "easy." Certainly there have been lives free from some types of concerns, and lives extraordinarily blessed in some ways, and yet even those gifts seem to turn into burdens for all too many people: a pattern I saw all too frequently as a teacher. We don't have a right to happiness, even though I think happiness is what human life is directed toward. On this sunny hillside south of Belleville, on the family plot, we prayed for Rita's happiness. In spite of everything, those of us who are Catholics didn't think that those were empty words, or an empty hope. I just keep coming back to the one thought that this woman – whose life I found pitiable in so many ways, for all the things she never got to know or experience – in the one time that I met her, in spite of all my perspectives and thoughts, spent much of that visit laughing.
15th-May-2009 05:53 pm (UTC)
I had a series of thoughts while reading your post.

There is an environmental activist here in Canada you just might have heard of called David Suzuki. Other than being a geneticist, he also hosted a tv show called "The Nature of Things". Apparently he had a son with Down's syndrome. He said in one show where it was discussed that his son was a blessing to him. For whatever reason, I took note of that and have never forgotten what he said. When Vesta_Venus was pregnant, we offered testing for Downs Syndrome. It was declined for both kids. Why test unless the objective is abortion if the result is positive.

The other thing that crept up was echoes of my bio-ethics course when I was doing my BTh. It was your remarks on doublespeak that brought back ideas that had formed during that course and have since continued to refine themselves. There was a case in Canada of a father murdering his daughter that was couched as a "mercy" killing. When it came time for the killer to testify, I was struck by the amount of "I" language - "I couldn't stand to see her suffer any more" etc. It became clear to me that the "mercy" killing was more about easing his pain and inconvenience than his daughter's.

The other thing that crept up was that this is symptomatic of the "ME" generation. There is little tolerance for anything less than expectations. If a disability is involved, or a even a terminal illness, what seems to be missing is hope. As part of the course in bio-ethics we watched a documentary filmed in Holland where potential candidates for assisted suicide were interviewed. Without fail, they all lacked hope. There was a case of a woman who tried to get the supreme court to legalize assisted suicide here in Canada. She failed in her bid, but went ahead anyways. She had ALS or Lou Gehrig's disease. But, so does Stephen Hawking. She gave up hope while Hawking didn't.

The last thought I had was that you, and others may have thought that Rita's life was pitiable in many ways. I suppose if either of us were in an institution with our current mental abilities, it might seem that way. But I will bet that for the most part Rita laughed and smiled every day and probably had a heart that was closer to god than any of us. I believe that was revealed when the three women who took care of her attended the funeral.

Just some thoughts ...
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