Love’s Labor

NOTE: The following was originally written in 2003 when Maura was seven and Julia was only two.

Remember when we had “darkies”? Remember those images of a smiling, simple folk singing and happy despite all of life’s hardships? Never mind that black people did backbreaking labor, had the injustice of family members being separated, and many other injustices culminating in free black men being lynched. They still sat around singing spirituals and dancing. At least that’s the images that whites with any consciences or sense of decency wanted to hold in our heads. Then the civil rights movement came along. Blacks took Power to the People. Those racists images still persist but have dissipated over time.

We need another group to help us feel good again. Let me bring you the new darkies.” Crippled people. That’s right. Look at how joyful they are and smile despite many indiginities. Oh, how they laugh. Why, if they were ablebodied, they’d probably do a nice shuffle step just like the darkies of a previous age. So let’s crank up put some Stephen Foster tunes on the jukebox while I drone on about those joyful crippled people. I feel eminently qualified, being the mother of one. Everyone tells me how smiley Maura is. Ah yes. And not a care in the world. As far as the powers that be are concerned, she won’t learn anything. So let’s just crank her through Special Ed ’til she’s twenty-one as the law allows and slap a done sign on her. That way the educators can feel less guilty about sweeping her and her classmates under the rug.

Kids like Maura continue to fall through the cracks. Can you gauge a person’s intelligence by just looking into their eyes? You could if you were sufficiently in tune. The trouble is, educators and school psychologists prefer to rely on “one size fits all” tests to measure intellect. And you cannot skip questions in the evaluation. If you have two “nos” in a row, then you have to stop that section of the test and move on to the next. On paper, Maura looks to be only twelve to fourteen months developmentally. The
principal where Maura went to special pre-school decided to cheer me up by telling me that “Maura is so cheerful and smiley. She will lead a good life.” The meta-message, of course, is that Maura is substandard, intellectually, but she won’t ever know what she’s missing. She’ll be happy and I should just be happy for her. Well, shucks. Let me put on my smiley face, too, and just smile, smile, smile.

What perplexes me is why these educators are dissatisfied with their inability to properly access these children. Why aren’t they coming up with better testing tools? Why are they relying on tests at all? These tests have been producing bad results for the last fifty years, but it’s better than having no test. And why are they inclined to tell parents that their children won’t amount to much and so we should all just grin and bear it. This poisonous attitude breaks a parent’s spirit. And these kids are NOT dumb.
They’re pretty perceptive. They pick up on the expectations of failure. Sad parents. Sad children. Eventually the children give up. I’ve seen it. I’ve seen the look of defeat on a child as young as five. His parent berates him at his own birthday party. “I don’t know why we even needed to hire a clown because you’re the biggest clown here.” Is it any surprise that these children don’t thrive? Their parents have given up because the prevailing message is that their children are subhuman.

So we fail these children. We fail them miserably. They don’t fit the norms. They cannot talk. They cannot walk. They cannot feed themselves. They need to be toileted. But we dare not look in their eyes. If we do, then we become mighty uncomfortable. We suddenly are aware that there’s a human being there looking back at us. Not just a fellow primate. A fellow human. Tiny Tim got it all wrong when he told Bob Cratchett that it’s good that he appears at church so that their fellow congregationalists may look upon him and remember Our Lord who heals the crippled. Tim, I hate to break it to you, buddy, but they wish that you’d disappear entirely. When the Ghost of Christmas Future shows Scrooge a crutch with no owner, the initial reaction might be sorrow but that’s quickly shifted to a sense of relief. If we were to be honest about it. Brutally honest about it. We all avert our gaze from the crippled child. Or we make a spectacle of them and trot them out for telethons. Not much in between.

Well, if I cannot beat them, I’ll join them. I think I’ll take up the banjo and sit here on the front porch and sing and smile. Maybe I’ll come up with something that Stephen Foster would have been proud to have penned. Let’s see. It’s got to be sufficiently sentimental and sappy. Join us on the porch and set a spell, and I’ll introduce you to my daughter, Maura, The New Darkie. But don’t let her giggle fool you. She’s really got a wicked sense of humor. Check your shoes before you leave. Maura’s younger sister, Julia,
will likely have untied them.

 The Sixties may be long forgotten, but the memory of the Civil Rights Movement is still deeply ingrained in some of us. We are not done. Not by a longshot. Some of us still feel compelled to continue the struggle. Or is that to struggle? Either way, there’s a need to continue to fight the good fight.

For me, though, it’s not about racial or economic equality. It’s about giving voice to the voiceless. Literally voiceless individuals like our older daughter who would give us all an earful if she could speak but still cannot. Except for primal screaming and screeching, she remains largely silent. Not, mind you,unobservant. She takes in a lot. Just not able to tell the world what she is truly about. And likewise, so is the case with a number of her peers.

According to Kabbalistic tradition, only God can give a person the gift of speech which then renders someone fully human. My daughter is VERY human. Just that people talk around her or simply don’t talk to her at all. And yet she remains in the room. Very much present. I am determined that everyone in our universe recognizes her humanity. She is not some wheelchair-bound golem. She is a real live girl and sometimes a real live brat who wants, just like any other eleven year-old, her autonomy. With every fiber in her being, she fights like hell to get it. Sometimes to my detriment, but I always admire her fierceness and tenaciousness.

Piece by piece, it’s been difficult to put all this together. Mny things have yet to fall into place. A window closes. A door opens. Sometimes it’s not always appearant where things will lead. Or how. People seem to patch in and out of our lives. Some more temporary. Some more permanent. Some have a more direct impact. Others are more along the periphery. An edge piece, if you will, of a very crazy quilt that is being designed by someone other than me. I am not in charge. I am not entirely hapless, either, but it does often seem random. When one battles a bureaucracy, the way doesn’t always seem clear. I have yet to figure out how to best navigate in fog or swim through mud. I pick up tidbits along the way. There is no particular pattern to information gathering.

That is why this blog is so important to me. Not just so that I can figure things out, but so others, in their own isolation, fighting for their own causes, can create a spoke in a social justice hub. Spokes on a wheel or pieces of a quilt or parts of a mural. Deep down we all want the same thing and that is some kind of justice for those we hold dear or for some cause that fills us with a deep passion. My hope is that we all blend together in creating a better world for those we’ve been called upon to serve.