Tuesday, February 28, 2012

Rick Santorum, Emily Rapp, Rick Moody

When the alarm rang this morning, Roger still in the air returning from South Africa, I couldn't quite face getting out of bed, lifting Robert from his own bed, peeling off his possibly urine-soaked p.j.s, changing his diaper, venting his stomach while he was lying on his back, putting a drop in his eye to treat his conjunctivitis, and dressing him--then putting him in his wheelchair, connecting all 5 points of his positioning belts, loading him in the elevator and bringing him downstairs to where all the work actually starts: getting 10 ounces of formula in him through his g-tube before the bus arrives, mixing a cocktail of powdered medications with a bit of applesauce and water so they might be drawn into a syringe, administering another liquid medication, finishing this with 4 ounces of water, putting on his shoes and socks, threading one arm into his jacket, wrapping it behind his back, threading the other arm through. Then loading his pre-packed backpack with the "lunch" of bolus and tubing and syringes I'd packed the night before onto the back of his wheelchair.

All of this labor leads to one of the moments my son loves the most: boarding the school bus, heading to school, his one independent act of the day. Not much compares to the joy Robert experiences daily as he separates from me and my husband to ride the bus "on his own" to school.

I needed five minutes before I could face this morning porridge of duty and love and joy, which Roger usually shares with me. So I flicked open my iPhone and I glanced at Facebook. My west coast friend Elizabeth had already posted a link to Emily Rapp's Slate essay on Rick Santorum's abortion politics and the facts of her son Ronan's life. It's a great essay, and you all should read it. As Elizabeth notes on her own blog, Rapp writes about paradox, about the pain of holding contradictory ideas in one's mind. I admire the essay and I admire Rapp's blog.

But I'll admit it: I had trouble with what she said the first time I read it. I'm generally stupidly brave to the point of cowardice. That is my personality. As I told another friend this week: "As a woman, I feel deeply trapped by both sides [of the Santorum/abortion cacaphony]—that whatever I might say would be wrong or misconstrued. That I have to pick a side when I find no side to pick. That the positions drawn at the party level of each side make no sense to me and/or give me something to fear." My friend, who is solidly pro-choice, revealed her own discomfort with essays and op-eds about these topics that provide a happy ending to an otherwise difficult situation.

And you can see all my stupid bravery and cowardice in action at The Rumpus, where I picked a fight with Rick Moody when he wrote about Bella Santorum and with other commentators when they argued, among other things, that Santorum (and people like him, I presume) have no right to pursue their own interests and their own careers--their duty is to care for their disabled children, period, having made, I presume their "choice." But I mention this because I do feel I perhaps misunderstood and misjudged what Moody was trying to say, even though I can't quite sort it out. In the end, I do think he was trying to argue that Bella should be left out of it, loved, and left alone. You can judge me if you like. Undoubtedly, I deserve it.

My husband tells me I spend too much of my time reading comments after articles about people with disabilities. A reporter friend of mine reminds me that all this is simply speech and people say stupid things and speech must remain free, no matter how ugly. I still, though, can't shake off comments that I end up taking personally that state, blankly, without appreciation for emotional complication that it would have been kinder to abort any person with disabilities. Or that people with disabilities do not deserve education, healthcare, sympathy or societal support. People say these things all the time. And many of them justify their beliefs because they claim they are pro-choice or they claim they are pro-life but the disabled are an exception to their beliefs about abortion.

Which is where I said to my friend this week that no matter what I say I will be wrong or misconstrued. Because, apparently, there are sides in this debate. And I have to pick one. And I don't want to. I'm tired of sides. I'm tired of Rick Santorum (I think he's an ass and beneath discussion). I'm tired of arguing about abortion. I'm tired of people implying that I made a "choice" to have Robert and I must live with the consequences. I'm tired of people wanting to tear apart the social safety net, portions of which keep my family afloat and give Robert a decent quality of life. I'm tired of people lecturing me about choices.

So when I read Rapp's essay, I read it quickly. I had to get up and get my own disabled child to school. I absorbed her point about being able to hold contradictory views, to love her son and still believe in a woman's right to choose, to live inside a paradox. Empathy welled up in me because I struggle daily with such a paradox. I would never deny to my friends or any woman the right to make a decision about a pregnancy. I had prenatal testing with my third pregnancy that resulted in my daughter. I didn't know what I would do if I discovered she had disabilities, but was never forced to come to terms with such a decision. Robert has an unknown, undiagnosed condition, and no prenatal test available in 1996/97 would have revealed that. No test would reveal it now. My second pregnancy ended in an early miscarriage. I have never had to make the decision to have an abortion.

But. But. But. I felt vaguely resentful of Rapp all day long because I couldn't properly hold her essay in my mind and I began to worry she was saying this was easy, this was clear. It's not a problem to hold contradictory thoughts. I thought she said she would have understood if her mother had aborted her (Rapp has a physical deformity). And I imagined her cutting a pretty wide swath through Disability Land, flattening the distinctions from physical deformity to Tay-Sachs disease and everything in between, based on my faulty memory of a single sentence. I worried she was suggesting that all people with disabilities are the same, something I find as ridiculous as saying that all white men are the same or all women are the same or, well, you get the point--a point Rapp couldn't possibly be making because she herself is part of the disability community.

I thought about this while I talked on the phone with Robert's case manager about the most recent complications in Robert's care, such as moving to overnight enteral feedings (and all the good and bad implications of that), as I discussed with the same case manager strategies for obtaining the eye gaze communication system Robert needs, as I discussed with my husband a serious problem we are having with members of our large extended family whom we feel are ladling judgements on us because of their baseline discomfort with Robert's disabilities and their disagreement with us about what constitutes proper quality of life for Robert, as I drove Robert to a physical therapy session where we adjusted his walker and made sure a brace that had been recast fit properly. In short, a typical day for a typical caregiver of someone with profound disabilities.

And then I got mad at Emily Rapp because I felt, in some ridiculous and possibly imagined way, betrayed by her. I didn't think this was easy for her, but I thought that, while prenatal testing failed to supply her with information to make an appropriate decision, she does, after all, know what will happen to her child and she can state unequivocally that her child is suffering. I can't stand in for Robert and announce that he is suffering. Because I don't know that to be true. And she brought up the issue of quality of life, and I was angry that I thought she felt she could say who was suffering and who was not. I worried that if she was comfortable saying that about her child that other people would assume I would be comfortable saying the same about mine.

So I decided to re-read her essay. Because I know I can be stupid. I know I can let my personal experience get the better of me when evaluating what other people say. I had had things to do all day and hadn't had a chance to re-read. And I re-read it and I decided that she had been far more subtle than I had been willing to give her credit for as I mulled over my memory of her essay throughout my day. I felt grateful to her for being willing to share her thoughts. But I replicated my thought processes from earlier today because I think it's important to acknowledge how touchy and complex these subjects are. How fearful parents of disabled children are of going public with any of these topics.

Rapp was simply and carefully and bravely laying the table with all of the moral and ethical issues that are embodied by her son and by my own, issues that Santorum glosses over with an absolutism I cannot abide.

Rapp's most important and most moving paragraph was her final one:
The tenor of the current debate frightens me, as it heralds a return to another age when women were not the trustees of decisions made about their own bodies. What I hope for other women is that they have the power to make their own decisions with as much information as it is possible to have, with respect to the specificity and complexity of their own circumstances, according to their own minds and hearts and not the dictates of another person’s worldview. Santorum believes that all life is inherently valuable, no matter how compromised or of what limited quality; that is one view. I believe that we need a more nuanced discussion about what quality of life is, and that it should be a woman's right to choose to terminate a pregnancy when the path of her child’s life is as compromised—and as terrible—as my son’s.
Rapp would like, I would like, a more nuanced discussion about what quality of life is, but I'm not sure we can have that at this political moment in this country. I feel that I am on the side of my fellow women when we argue for our rights to make reproductive decisions, to have access to birth control, by god, to hold jobs. But I don't know if these same women are on my side when I say my son has a right to an education, to healthcare, to a decent quality of life. Because all of those things are extremely expensive. And we Americans take capitalism very seriously, allowing the concept of value to seep into discussions about human beings. Once "value" poisons the well, my child doesn't stand a chance--it's too easy for Americans to conflate quality of life with whether a life is worth living or which lives have more value. We can't have a nuanced discussion until we can separate those concepts.

Another thing that bothers me about the topic of abortion and children with disabilities is that of privacy. Women who have the information available to them to decide an abortion is best for them never have to make that decision public. And that's the way it should be. But for those of us who have children with disabilities or fatal illnesses or impairments of any kind, what happened to us, the decisions we did or didn't make, are de facto public. And we often bear the brunt of this debate: people in our community know who we are. And the public, scathing judgements we and our children are forced to endure as a result are entirely unfair. Just read the comments after Rapp's essay or any article about children with disabilities.

I disagree with Rapp on only one issue: her use of the word "choice" to describe what she later, in her last paragraph, terms a "decision." "Choice" implies an American fantasy of free will that virtually no one in this country actually has--it describes the fantasy that happy endings exist and may simply be selected from among other options.

Because we live in a democracy (thank god) the way in which we discuss abortion, particularly its relationship to people with disabilities, sets a context for public empathy for persons with disabilities, as well as the public policy and funding of social programs that support the unbearable costs to individuals and families.

If I were allowed to commit one significant political act in my lifetime, I would take a giant cultural eraser to the word "choice" relative to the subject of abortion and disability. I would urge people to conduct the following exercise: write about abortion, but don't use the word "choice"; use other vocabulary instead. Then meditate on the nuance that ensues. Because none of this is about choices. All of this is about living within constraints and having to make decisions, decisions that are often ugly, frightening, and sad. There are no happy endings where I live, and no one should be able to imply that I could have picked a happy ending and chose not to do so.

[rev. 2/29/12]

1 comment:

Elizabeth said...

When I posted Emily's essay, I, too moiled and muddled throughout the day with nearly the exact same feelings and thoughts you've expressed here today. I purposely didn't write about them, because I literally couldn't. I lazily chose to dwell in the paradox, understanding implicitly what she was saying. Your last paragraph resonates powerfully with me -- I have often thought about the "choices" we have been giving regarding Sophie's care -- her medications, treatments, therapies, etc., and I've rued even using the word "choice" -- but I've joked about it, pushing the absurdity of the word away. You've said, exactly, what this is, and "none of this is about choices."