Like most US citizens, I've spent hours and hours watching budget debates in recent months. As the crisis reached its peak in early August, I remembered this post. I know that all of you, as parents of children with special needs, some of whom will never make any tangible contribution to society, will understand why.
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When I was barely pregnant with Jacob, my friend Rachel had a baby, a little girl named Gabrielle. A lovely, tiny thing with a shock of black hair I was compelled to pet whenever I held her, she was Rachel's first baby.
Six weeks later, SIDS, that terrible night thief of babies, stole Gabrielle away.
It was every bit as horrifying as you imagine, and worse. Even now, I am pushing away my memories of Rachel in the days and weeks that followed. She was shattered, blistered all over with grief.
Because Gabrielle mattered. She was here, and then she was gone, and she mattered.
Three years later, Rachel was dropping her sister Josephina off at home after an evening out when Josephina's husband opened fire on the car. He killed Rachel, her sister, and a friend who was sitting in the backseat before he ended his own life.
I remember too well that morning in May, 1996. I stopped at a convenience store to buy a cup of coffee and a newspaper and there was my friend on the front page.
That weak-in-the-knees, dear-God-what-has-happened, the-whole-world-is-spinning feeling is way too familiar to me. Way too fucking familiar.
So now, with her mother gone and her family scattered to the winds, I visit Gabrielle's grave twice a year. I trim the grass and scrub the stone until it sparkles.
If I don't do it, who will?
Gabrielle was here, and she mattered.
In a world that insists constantly that some people don't matter, I need a ritual that says every person is important.
Why this post at this time? Because of the tragic story of Saiqa Akhter, the Texas mother who murdered her children Zain and Faryaal last week. My reasons are not exactly what you might predict them to be; it is not her actions but the world's response that has captured my thoughts.
I have no idea what illnesses of mind or body beset Saiqa Akhter and her family (though most reports indicate that at least one of her children had been diagnosed with autism). I can guess at what caused her pain because I have been to some dark and ugly places myself, but I don't know what corner she turned. I've never been to that place.
And this tiny voice at the very furthest reaches of my skull asks, maybe I didn't turn that corner because my family paid for Carter's private preschool so I could catch my breath. Maybe, during that dark time when I was far from acceptance, knocked off-balance, lacking the support that I have today, maybe... I can't imagine that, but I've learned too often that immunity is an illusion.
Another thing I can't comprehend is this: that so many people believe having compassion is equal to making excuses. I have infinite compassion for this mother, and what she did was inexcusable.
But that's a soapbox for another day.
I was reading the news coverage of this story and found myself (as I always do, glutton for punishment that I am) reading comments. Angry, bitter, hateful comments. Judgmental comments. Ignorant comments.
And then this: I don't see what the big deal is. We overvalue human life. These kids were autistic. They never would have made a real contribution to society, so who cares if they're dead?
I can see you, sitting there with your mouth open, your eyes wide with shock. I want to join you in your shock, to view this (anonymous, of course) commenter as an aberration.
But he's not. In fact, his sentiments mirror a cultural reality of which most people are entirely unaware: some of us are disposable.
Some of us don't matter.
Some of us are worthless.
Most of the comments I read about Saiqa Akhter's murder of her children were furious, hateful things about how she should have asked for help. Why didn't she call for help? Why didn't she call someone?
Of course, we have no idea that she didn't, but that's the faulty assumption that underlies everything: there is help. There is always help. If one asks, help will come.
If you believe that, I think some Hurricane Katrina survivors might like to have a word with you.
Because the kind of help that those commenters mean doesn't exist in most places. One person suggested that she should have called 911 and asked for an ambulance to come get her children.
That isn't how it works. I've heard more stories than I can even remember. Parents of an acutely suicidal nine year old girl took her to the ER where they were told to take her home and give her Benadryl. Children in the grip of florid psychosis are sent home from the hospital after 2 or 3 days. The waiting list for a 30 minute appointment with a pediatric psychiatrist here in Albuquerque is 6 months long. Schools don't have the resources they need to properly educate children with emotional and behavioral challenges. There are bed shortages, provider shortages, money shortages, every kind of shortages.
We parents? All of those gaps are left for us to fill. There are huge gaps, enormous needs, long stretches of time, during which we are all alone, left to deal the best we can.
If you call an ambulance because you sprained your ankle, that ambulance will take you to the hospital (the paramedics will roll their eyes until they're dizzy, but they'll take you where you want to go). If you call an ambulance for a psychiatric emergency, no one is going anywhere unless someone is on the very brink of death.
I'm well read in the historical and political reasons for all of this. You can watch a wonderfully informative documentary about it here. It's complex, multi-layered, an impossible knot.
Except that it's not. It's one simple thing: some of us are disposable. Some of us don't matter.
Not "some people." Not "those people who are ill" or "those people who have disabilities" but some of us.
My ritual at Gabrielle's gravestone may seem silly, like a boy whistling in a hurricane, and that might be true. But if someone is remembering Gabrielle, then someone will remember Carter and every one of the other people who might never make a tangible contribution to society.
None of us is disposable. My penchant for moral relativism aside, I am right about this. The alternative is too terrible to contemplate.
Adrienne Jones lives in Albuquerque, New Mexico with her husband and their four children. She writes the blog No Points for Style.