Susan's Blog

Wednesday, February 16, 2011

Show US The Money

I keep trying to fix everything, but I’m tired.  I’m like that little Dutch boy, plugging my finger into the leaky wall.  As soon as one hole is plugged, another leak springs somewhere else.  I just keep standing there, like an idiot, water all over my shoes.

Even before I knew nothing about Albert Camus’ version of Existentialism, I knew that you were supposed to do this.  Like the good Dr. Rieux in The Plague, who just keeps on trying to heal the doomed and dying of Plagued Paris, we’re all supposed to be good, without thought of the end product.  I was raised that way.  My mom said it was part of being a Jew:  Tikkun Olam, repairing the world.

You probably were raised that way, too, Jewish or not.  Not to be saints or martyrs, who usually died for a cause, who perhaps valued others’ lives more than their own, but rather, to be humans who just kind of work to make something better, with the hope of success, but not really.

Autism parents are often made out to be saints when all we really are are parents.  Tired parents.  When someone says to me, “You do so much,” with admiration in their voice, I fight hard to see it as a compliment.  But I can’t help but think about the double edge of that kind sword:  the implication that Nat is so so so so so hard.  The implication that another parent might not do the same because he is just so _______ blech.  My huge-but -repressed indignation rises up when I get that compliment and wants to say, “Don’t say that!  Don’t even think it!  He’s just Nat!  You would do the same because he is simply your (my) child.  All children are worthy of whatever effort.  That’s just our job as parents.  It’s not saintly, it’s not heavenly-ordained, it’s not beyond the Pale.  It is just plain old human love.  I’m sorry it’s so hard to give me a compliment, though.  I don’t expect this to be clear to everyone.

It’s like they think they have it easier than me.  But how do they know what easy feels like to me?  Some people think I do a million things in a day and they feel exhausted just hearing about my shit.  But that high energy and intensity comes naturally to me.  I find it exhausting to be bored and uninterested.  But having a day ahead of me that consists of 10-mile bike ride, teaching my class, picking up Benj from school, thinking up something interesting to write, feeding us dinner, settling down leaning on Ned on the couch and watching In Treatment while a laundry hums:  that is a good day.

Getting pissed off at something happening in the world of disability is also usually part of a good day for me.  I love the energy of my anger, and harnessing it to write something scathing and to-the-point.  I love calling my fellow travelers to arms.  But sometimes it is just so tiring.  Wave after wave of bad news hits me upside the head, such as the latest:  My beloved Barak’s proposed budget, which contains within it deep cuts to human services and education.  I can only imagine the forces of evil he is up against in Congress, the wealthy who must hold tight to their profligate way of life and who refuse to give anything to a government for the people.  That he would lay out something as heinous as these cuts, well, you shouldn’t know from it. But now you do.

Still, we have to fight it.  It’s not only not good enough, it’s bad.  It’s such a leak that it’s like New Orleans, almost.  So get out your caulk and get ready to yell because they must not cut social programs, human services.  It is the lifeline for people like Nat, who want to live worthwhile lives but will not be able to depend on their families forever, if at all.  Write to your Congressman using this easy link and tell them to find that money somewhere else.

1 comment

That sounds awful re the cuts, which specific parts are they going to cut, do you know?

— added by Kate on Wednesday, February 16, 2011 at 11:38 pm

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