When I was in school, we recoiled in horror at the revelations of Dr. Mengele. We laughed, with our 20-year perspectives, at B.F. Skinner. We shudder and poo-poo Dr. Watson's emetic statements. Science can and does have a voice in our experience, but will always struggle with what we call "humanity."
I know I keep bringing this up, but it keeps coming back to me. I can't ignore it.
Today, I'm captivated by the prose as much as I am the subject matter.
From Patricia E. Bauer's blog, By Timothy P. Shriver, writing in Commonweal (subscription required for full article):
- Although our policies over the past thirty years have become more supportive of people with Down syndrome, these children are increasingly seen as liabilities. We’ve become more generous with services, but more judgmental too. In this strange mix, what’s clear is that we still don’t believe that people with intellectual disabilities are valuable. When parents knowingly choose to have such a child, the message they frequently receive from the larger society is that they have chosen wrongly. Imagine knowing that others believe your child should not exist.
… Those who live with and care for people with Down syndrome are able to do this because they know something that the technicians of genetic testing may need to learn: in giving to one another, we get back far more than we give. And in accepting unconditionally the full dignity of every human being, we often discover our own. In this way, the parents of children with Down syndrome embrace the always-unfulfilled aspiration of our nation’s founding — that we are all equal, capable, worthy of a chance, no matter what. But does our nation still believe that?
At this moment, the stakes are high. For make no mistake: we are in the midst of a silent resurgence of eugenics. The idea that each of us has equal human value regardless of background, wealth, religion, or disability — a cornerstone value of both our religious traditions and our political heritage — is at risk today.
Those are powerful words, to me. I know that all of you that I know who read this are aware of this. It has always been expedient to discount "the full dignity of every human being" to make one's own life easier. It's the selfish, evil undercurrent of every societal system I've ever studied. In our society, however, opportunity exists. Opportunity to give, individually, institutionally, governmentally.
There is much that we do to each other to devalue ourselves - "Reality TV" is enough to prove that point. I cannot fully explain the value that Emma has brought to my life, my family, my community. She has re-defined concepts like 'value', 'dignity', 'courage', 'equality', to me and to others, merely by her presence. Many of her contributions still lie ahead; for now, she has at least the entitlements to make some of them. It is so strange to walk with her in public places and realize that some of those looking askance at her deliberately chose not to share the life that we know. Neither they nor I are criminals in this world - but we both endure the consequences of each other's actions. I don't like that last sentence, but it is the truth.
This morning, I read a post on Downsyn.com from a Mom who had just learned that a friend had recently aborted a child with Trisomy 21. She was not sure how to feel, how to judge, how to act. I wasn't sure how to finish this piece. I will, with my response to her (others had been more direct and eloquent than I could have been) :
Amy has said it, so very well.
One of my favorite things in this world is "A Christmas Carol", by Charles Dickens. There are many haunting messages (and I'm not talking about the ghosts) in this story. One scene that is often left out of dramatizations is the one where Scrooge's fiancee' breaks off their engagement. "May you be happy in the life that you have chosen," she says to him, when everyone, including the reader, knows that this is a huge error on Scrooge's part. He does not see, until reminded, what sort of impact his decisons have made upon him.There are many things that most of us don't talk about, but live with. We didn't know until after a miscarriage that several of our closest friends had had them. I think one of the unrealized undercurrents in our society is the emotional impact of aborted babies. I can't prove it. Every life has meaning - I am now convinced of that. That includes those that are never given a voice. Some of us try and speak for them. Some of us live with the choices that we have made, and prove the point. That does not make us better than they are, but we as a society are made better, [i][b]not by what we do, but by who our children are[/b][/i]. We are simply being stewards of what we've been given.It's not for me to judge. It [i]is[/i] for me to "be happy in the life that I have chosen."
That statement echoes in my head, nearly every day.
