Sunday, August 21, 2011

Disposable People

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.

18 comments:

  1. I worked in a psych ER as well as on a crisis team that would respond to calls from family members by going out in the community to assess and safely transport folks in to get proper help. This psych ER and crisis team served a large portion of the state. Funding has been cut and soon it will be gone, but all of those patients are going anywhere. Maybe to EDs where they are begrudgingly shoved in corners. But what will their families do if they can't get them there? Who will they call for help?

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  2. This post took my breath away.

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  3. You are quickly becoming 1 of my fave writers.
    Because you understand that real life happens and it's not always (or usually for a lot of people) pretty.
    But that doesn't mean we can't have hearts.
    And it doesn't mean we can't or shouldn't be compassionate and caring to one another.

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  4. Magnificent post
    you took my breath away

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  5. Yes, you are right on this. A few years back, a mom of a child with my own child's particular rare disability killed her children and herself, a year or two after her husband had committed suicide. People's reactions were horrible. No one in life had recognized the deep, desperate black hole she was in, and then in death she was condemned. Clearly something had snapped, but before it came to that, she was left alone to fend for herself. So often neighbors and acquaintances will say, if she had only asked for help... but she had asked, and to her, at least, it seemed no one cared.
    I like how you have highlighted the US as in "some of us are disposable" - it only seems valid as long as the "disposable" are kept far, far away from the rest of us. Eventually, tho, we all become inconvenient. We need a civilization that respects life, or we are all in trouble.

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  6. I'm sorry, didn't the Saiqa Akhter tragic story happen a year ago? Why bring that up now?

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  7. Oh, and my comment above ... I didn't mean to be disrespectful. I understand your post; just didn't know why you'd bring up the pain of someone from a year ago. I imagine that woman has enough pain already.
    Sorry for the comment.

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  8. I don't even understand your concern. Did you read it? I'm not remotely condemning Saiqa Akhter.

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  9. Excellent and thoughtful post. I had not heard of that particular story but I have heard of many others. I choose not to judge these things -- I'm not sure I even find them "inexcusable." After sixteen years of raising a daughter with severe disabilities, I'm in no position to judge anything except, perhaps, this increasingly strange culture we live in where life is disposable and everything, even a life is commodified.

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  10. Elizabeth, I'm not sure I find it inexcusable either. At the back of my mind I have some vague, shadowey plans for if...certain things. You probably know what I mean.
    But I feel like I have to pull punches lest I be attacked for a thousand different things, but people who can't imagine what it is sometimes like. Like the guy who lectured me on FB the other day because dammit, why can't I just see the positive in my son and quit being so concerned with all that's wrong? That's the kind of person who will condemn, no matter what. He believes that in the face of profound pain, violence, psychosis, etc., that positive thinking (and faith) would make it all tolerable. Those people believe things will always be OK if we just try really, really hard (and by the same token, the reason hhings aren't OK now is because we aren't trying hard enough, or something. Always something that's in me.
    And how can we judge? We know where the edge is. One of the things you find there at that edge is humility.

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  11. Hi, I only occasionally visit this [terrific!] blog, and I'm afraid my comment was either misinterpreted or [perhaps more likely] misinformed on my part.
    When I read the title 'Disposable people', and that 'I have infinite compassion for this mother, and what she did was inexcusable', I missed the compassion part on first reading, and I am sorry for my misunderstanding.
    Also, your initial posting, and subsequent comments above, are a reminder that dialog online really ought to be constructive. It's likely that we all see this negative tone in discussions, in different venues, online.
    While I see the value of connecting with others via social media, I also miss the days when neighbors were civil to one another - mostly. :)
    I'm sorry that my comments seemed non-empathetic [if that's even a word]. That wasn't my intent, truly.

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  12. Your writing is a profoundly personal reminder of John Donne's famous poem:
    No man is an island
    No man is an island entire of itself; every man
    is a piece of the continent, a part of the main;
    if a clod be washed away by the sea, Europe
    is the less, as well as if a promontory were, as
    well as a manor of thy friends or of thine
    own were; any man's death diminishes me,
    because I am involved in mankind.
    And therefore never send to know for whom
    the bell tolls; it tolls for thee.
    Many thanks! love, Stephanie

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  13. As a father who often visits a grave for my daughter, Gabrielle, who died before she was born (the twin to her sister who was), I relate to this post. Everyone matters and sometimes it takes a lifetime to understand why or when or how. This is why I think that writing about that one moment in time when we want all of life to 'always just be like this' is so important. That's when people matter, if only for that one moment in time. I'm sorry for the losses you've experienced but I can see the hope in your writing. Thanks for sharing it with us.

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  14. I can't say enough good things about this post, so I'll just say thank you for writing it. It says so much.

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