t'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.