Moral problems that do not fit tidily into preconceived ideas are fascinating and a good way to occupy oneself in the years of Mild Cognitive Impairment. Moral problems, when sufficiently complex, require complicated sentences, and I enjoy complicated sentences. So: I have been thinking recently about Bella Santorum.
Bella Santorum is the eighth child (one prior child died when just two hours old) of presidential candidate and Internet punch line Rick Santorum and his wife Karen Garver Santorum. Rick Santorum, though charming and Midwestern on the campaign trail, though given to a humbling fashion tendency—the sweater vest—that has gotten most men a beat down in the middle school years, is among the more doctrinaire and dangerous politicians of the moment, right up there with Sam Brownback or Jon Kyl or Mitch McConnell. He never met a social issue that didn’t require from him a knee-jerk one liner that would turn heads with its oversimplification and vacuity. He never met an earmark he wouldn’t try to bring home to Pittsburgh. Though he is not as preening and narcissistic as Newt Gingrich, he is just as willing to say anything. And Karen Garver Santorum once wrote a book on children’s manners, called Everyday Graces. Before that, though, before marrying Rick, the guy whose last name also refers to a frothy mixture of lube and fecal material etc., she was living out of wedlock with an obstetrician who provided abortions. I’m betting that in those days she was a different Karen.
I find hypocrisy and mendacity among politicians somehow reassuring. It goes to show that anyone can be bought, and that in politics the price for which people can be bought is usually rather low. These things make the grim politics of the present less surprising.
However, when I think about how much contempt I have for Rick Santorum and how sure I am that somewhere in him lurks an anally-compulsive disco boy—why all the comments about how horrible it would be if people were allowed to do anything— I then start thinking about Bella. Bella is three years old and was born with Trisomy 18, which is a genetic condition not unlike Down Syndrome, but with more serious health complications. The list of potentially lethal effects of Trisomy 18, in fact, is rather terrifying. Half of children born with Trisomy 18 die upon birth, and 90% die within the first year. Santorum himself has indicated that while he was campaigning in Iowa at the end of 2011, Bella was having a lot of trouble breathing and had to be sent home to Virginia to be cared for by a nurse.
Now: when Bella was in utero Santorum and his wife presumably were able to have an amniotic fluid test to determine that Bella had a genetic abnormality, which Bella was more likely to have, because of Karen Santorum’s age at the time of the pregnancy, and they were able to decide to carry Bella to term because that is consistent with Santorum’s positions on abortion. More power to them. When my daughter was in utero, my wife and I decided not to get the amniotic fluid test because of the risk of miscarriage for “geriatric” moms, and because we agreed we would be content to have a child with Down’s Syndrome (Trisomy 21), if it came to that, which it did not. I commend the Santorums for carrying Bella to term and for caring for her now that she is here. Some people are not physically like the majority of us, and yet we can still love them deeply.
This is the sort of thing that bears repeating. Even when you are Pro Choice in all cases.
Still, Just as I found Sarah Palin’s use of Trig on the campaign trail in 2008 slightly sinister, so have I found Bella’s appearances in Iowa sinister, and I’m glad she is back in Virginia where her breathing problems can be monitored carefully. But as a parent myself I am afraid I am also thinking about how keen is the absence of a child especially during a professional year as demanding as what Santorum is going through now, assuming Santorum is capable of human emotions. Yes, he has six other children, one of whom, an older daughter, acts as a spokesman for her dad. This daughter recently indicated that the family carries around lapel buttons depicting Bella, so that she is uppermost in their thoughts no matter where they are. Publicity stunt? Or grief manifested?
And what does Bella think about exactly? And how often is she affixed to the breathing apparatus? Does she think about the discomfort of the mask? Does she miss her parents? Are there certain repetitive images, screensavers, let’s say, that are capable of keeping her mesmerized for hours? Will there ever be an age when Bella Santorum can understand party politics? Will she respond to love? Will she, like a friend of mine who has Trisomy 21, love Elvis? And when they say that those kids who survive a childhood with Trisomy 18 will “live into adulthood,” what does that mean? Will she live out a complete term? Or will she devastate her parents and her siblings down the road? Does she realize that there is something about her that is unlike other children? What will the Santorums do with her if her dad wins the nomination? (Unlikely, I know.) Does Bella feel the pressures of the campaign? Does she care what her dad does? Will she welcome him home when he loses? How did she feel in that one impressive publicity photo she did with her dad, where he seems to have John Boehner’s tan on? Was that love enough for her? And is she named after Queen Isabella? Or Isabella Adjani? Wouldn’t we all love Bella? If Bella were sitting in our lap?
Easy to loath Santorum. Easy to love that Internet buffoon that Dan Savage has made of him. But what about Bella? Have you thought about Bella?
19 responses
“Moral problems, when sufficiently complex, require complicated sentences, and I enjoy complicated sentences.”
The following excerpt for one of your sentences:
” . . .the guy whose last name also refers to a frothy mixture of lube and fecal material etc . .”
. . . well, sadly . . you’ve mistaken trash-talk for nuance and outed yourself as a hate-mongering leftist.
To the commenter above: Rick Moody doesn’t need anyone to come to his defense, but I’m bored, so here goes.
If you read any of his novels, particularly the most recent two; if you read his memoir, The Black Veil; if you read any of his writing on music, especially “How to be a Christian Artist” in the Believer; indeed, if you read more than the first two paragraphs of this piece, you would know that Mr. Moody is, if anything, a love-monger.
agreed — moody is a love-monger. (among his other charms and talents.) xo
The word “Santorum” conjures up images of the crumbling and run-down communal bathrooms of old and abandoned insane asylums, with water spraying from broken pipes and strobe lights going off. Tragic that Bella got stuck with that last name
This, to me, is the essential tragedy of being a person of the left. I do not doubt that Rick Moody is caring, giving, intelligent and loving – until – his worldview is challenged by someone from the right.
All other groups receive a wide berth of politically correct deference, but it’s always open season on the those who ascribe to conservative values. All tender refinement in a man like Mr. Moody is given a waiver when vanquishing the goody-two-shoes who stand firmly on moral issues that those of more liberal persuasion prefer to find: “sufficiently complex.”
Mr. Moody floats the dark notion that Bella is used for “sinister” campaign purposes. He does give the senator a pass as probably being “capable of human emotions.” It’s stating the obvious when the author of this love fest finally and breezily drops these words ” . . . how much contempt I have for Rick Santorum . . ” into this tortured display of moral angst.
All that bile and slander to grease the soon-to-be-strewn with rose petals path onto which Mr. Moody well then trundle his delicate sensibilities as he
worries about what future may fall to this child of vile Santorum.
The outrage at having to defend his nuanced morality permits the preternaturally kindly Mr. Moody to slash and burn the parental instincts, character and intentions of the senator with smirky comments about sweater vests – followed by the fecal association with his last name . . . or the lovely turn of phrase: “anally compulsive disco boy . .”
All that bile and slander to grease the soon-to-be-strewn with rose petals path onto which Rick Moody will then trundle his delicate sensibilities as he
worries about Bella’s future in the hands of her parents.
Kevin . . . if you’re tendency to boredom has been allayed enough to stay with me, and if Mr. Moody does, indeed, allow my defense to be posted – then you probably must agree that I did read the entire piece.
And Mr. Moody, if you’ll permit my asking . . . would you agree with Kevin’s characterization of yourself as a “love-monger”?
You express your concern for this unfortunate child by asking “Will there ever be an age when Bella Santorum can understand party politics?”
Perhaps a more troubling question is: If she were lucky enough to happily grow into young womanhood . . .. how would her parents explain the hate that an otherwise ‘good’ man expressed in a piece like this?
Mr. Moody has every right to have contempt for Rick Santorum. ANYONE with a brain cell working would see what a wretched human being he is. Why? because he spreads hatred, dissent, and misguided propaganda. Bella deserves a better dad. She has my sympathies.
Mr. Ducky, politically correct deference exists to protect those oppressed by irrational prejudice (aka bigotry), not bigots themselves.
I took Lisa’s comment as representative of the overall feeling of this post:
“Mr. Moody has every right to have contempt for Rick Santorum. ANYONE with a brain cell working would see what a wretched human being he is. Why? because he spreads hatred, dissent, and misguided propaganda. Bella deserves a better dad. She has my sympathies.”
It seems to me to be hypocritical for one to say that someone spreads hatred after a comment like this.
I confess I don’t understand what Mr. Moody is trying to say: on the one hand, he wants us to acknowledge his contempt for Mr. Santorum. On the other hand, he wants us to “think of Bella.” But think of her to what purpose? He ties the idea of Bella both to the idea that having a child with disabilities is a “choice”–to be blunt, to the reality that children with some types of disabilities do not have to exist at all because it is legally and morally acceptable to abort them (and I say that as someone who believes abortion should be legal and the decision is a private one). Yet he decides to make this decision public, drawing an analogy to his own situation. Why? Is he making a political point that there are or should be consquences for parents who make that decision–knowingly or unknowingly?
In addition, he asks us to think of Bella in terms of what she thinks and what he assumes she can’t think–that is, he asks us to think of her in terms of what he imagines her limitations are. Bella isn’t a full or legitimate human being in Moody’s eyes. She’s not like you or I, he implies, maybe she can’t think at all. He asks what the Santorums would “do with her” if he were to win the presidency, as though a child with disabilities would never occupy the White House with her family, as though such a child would deserve to disappear. He implies that Mr. Santorum and Ms. Palin simply cynically use their children with disabilities as props on the campaign trail. A lot of politicians bring their children out on the trail with them for some events–why shouldn’t a politician with a disabled child be inclusive the way so many other families with disabled children are around this country?
I mean, should I not bring my own disabled child to the grocery store? Do people wonder what I’ll “do with him” when he gets older? Do they assume I “chose” to have him? Do they wonder why I didn’t abort him? Do they think he’d be better off dead? Do they wonder why I think he deserves an education and access to social services? Do they think because I “chose” to have him and he’s obviousl a drain on tax-payer resources that I should have to pay for everything others kids and parents take for granted in this society?
Moody greatly simplifies disability by aligning it with well-known genetic problems. The reality is that there is no prenatal comprehensive test for genetic disabilities–what can be tested for represents only a small slice of problems that can cause disability. So people don’t “choose” to have disabled kids. There’s also the matter of in utero strokes, birth accidents (typically oxygen deprivation), and others. Disability will always be with us–even if we could us whole genome sequencing prenatally–because the human genome is constantly changing. And, furthermore, even if sequencing were available, no one could say for sure that the thousands of genetic variations captured by a test would or would not cause disease or disability. It would be an ethical nightmare. My son’s, frankly, catastrophic disabilities have been undiagnosed for 13 years.
I’d love to know what Mr. Moody’s point was? By aligning his contempt for Mr. Santorum (for whom I have no great love either), he creates a problem with tone in which it’s difficult to understand exactly what he means by his references to Bella. What, exactly, are is he trying to say about children with disabiltiies? The clues and cues here are not heartening. I am very liberal, but even liberal persons need to confront the fact that bias against persons with disabilities is widespread in this society, cutting across the political spectrum. Every person on a comment board who complains that parents “chose” to have such a child, that such a child is a drain on taxpayers, that the parents of such children should not expect inclusive educational experiences for their children, that it would have been “kinder” to abort them–all of these people are operating from the base assumption that children with disabilities are not really “people,” that there’s something substandard about them, something, perhaps, worthless, non-human. That’s what’s most frightening to me about the society in which I live. Not Rick Santorum or Sarah Palin.
Jeeze, what an interesting array of complexities contained above!
Yes, yes, love love, and more love, word known to all persons. A surfeit of love, an ocean of love, with waves that upend and disturb, and challenge, and repel and reward. So much love that I can love Bella without reservation, even though her dad is willing to call a certain kind of person a dog, so that he may obtain higher political office, and even though he is unable to read the Holy Bible in any kind of sensible way. I love him anyhow. But I would never vote for him. I hope he goes down in a ball of flames, which he will do, very soon. But I love him, and his daughter! I love him, as I love all sentient beings. But I love his daughter more.
And, Ducky, here is my other cheek:
I think the child is lucky to have survived as long as she has, due to her illness, regardless of her father’s politics and whether his detractors and supporters torch or uphold his political ambitions. So young as yet, her future and repository of memory are still in the making. All children of celebrities must navigate what they feel about how such celebrity impacts their relations with their parents. For the sake of her development, I hope she lives as long as she can with her condition, but who her father is feels rather outside the point of a father’s/daughter’s love narrative. Perhaps therein lies the schism here. His politics and his parenting remain separate for me, liberal bleeding heart though I am. The challenges she faces are those that any person in her position might face. Does he use her on his campaign trail to elicit sympathy? Immaterial. Does he love her and cherish her for each moment he spends in her presence? As a parent, for now, I’m more interested in the second question. Cheers all, H
P.S. Incidentally, in light of this conversation, I came across an article about her this morning. http://news.yahoo.com/blogs/abc-blogs/santorum-says-daughter-bella-miraculous-turnaround-040725153–abc-news.html
This statement from this article, “‘I was up with her a lot of the night,’ Santorum said. ‘By the end of the day, it was really, really clear she was struggling’” seems to reflect a parent in it for more than a press photo. Though I would never vote for him due to my differing beliefs, on an interpersonal level, I do feel for him caretaking for a small endangered child in the wee hours of the morning and appreciate that he bothered to correct an erroneous press statement about where she had been hospitalized.
If our American/Western/capitalist/democratic society is ill (and, please, somebody tell me why I should think otherwise!), I would venture to say that a primary component of the disease is our black-and-white thinking: Entity A (Science? The Church? Western Medicine? The Media? the Democratic Party? the Republican Party) is wrong/evil/greedy/stupid while Entity B (Science? The Church? Western Medicine? The Media? the Democratic Party? the Republican Party) is right/compassionate/a voice of reason/visionary.
Seems to me that the kind of polarization we’re suffering these days is related to what Rick (Moody, I mean. I have not been able to get to a place of understanding where Rick Santorum is concerned.) is trying to get at here: “Moral problems that do not fit tidily into preconceived ideas. . .”
I took it that he was bringing up Bella as a reminder to himself, as well as the rest of us hate-mongering leftists, that there is no black-and-white. Moral problems require complicated sentences because life is—we are—complicated. Santorum can’t possibly be ALL BAD—or all good, for that matter. No one is, despite the unfortunate tendency of our media—for the sake of a GOOD STORY—to paint us (our politicians, in particular) as immediately knowable: good guy or saint (or untrustworthy sneak or bad apple). So that Rick Santorum, even though I might find some of his political stances frightening and despicable, can still be a loving dad, trying to do the right thing.
Sometimes Dad’s an asshole.
Thanks L!
Disability is not other to me, which was why there was the sentence: “Some people are not physically like the majority of us, and yet we can still love them deeply.” Etc. And the piece WAS meant to be, for those of us who are stuck in a programmatic dislike for Santorum, a reminder to care about the child Bella, despite the political positions occupied by the adult. All the stuff about “kinder to abort the child” does not apply to my piece, not does “there should be consequences for the parents,” or the vast majority of Jeneva’s letter, in fact any of what I seem to be accused of in her note. Yes, I thought I was reminding “hate-mongering leftists” to care about the little child. Actually, I consider myself a Trotskyite, but that’s another story . . .
Santorum, despite being a person of no political merit whatsoever, has a disabled child, and I think it was brave of him to do it, though I am Pro-choice, and I believe that it is possible, even imperative, to love disabled children, and I do love “special needs” children, and I do not think they should be aborted, though that choice exists, and I think it is correct that it exists, and it is a moral choice for all thinking and feeling adults. What is literature, Jeneva? Can we admit that question into this discussion? Literature is where language is used to explore ideas that do not resolve into dogmatism. And it is my job. Perhaps I was inadequate in this case, in that I refrained from dogmatism. But I did not refrain from compassion.
I love Bella.
Do I have to keep saying this?
Actually, Rick, I felt I approached some aspects of your essay as literature in my remarks. I read most of your language closely, noting inconsistencies, which I attempted to deconstruct. I noted that some of the statements you made were in conflict with each other–which is part of the problem of language, and of “differance” according to what I will cop to as a basic reading of Derrida. Who was, I might add, keen to understand how language creates bias and categories of exclusion. For example, you say that “disability is not other to me” yet you then note that “some people are not physically like the majority of us.” You frame the beginning as a “moral problem” and then point directly to Bella, rather than to her father (in the first paragraph). I stand by my earlier remarks about tone. Tone is certainly difficult to manage, particularly in this case. I might also note that you were done a disservice if the title of your piece is “Bella Santorum,” yet the URL, as I note now, reads, “ode to bella santorum,” which, if used for the title, might have been a better indicator of tone than the former.
I certainly believe that literature tries to explore ideas that do not resolve into dogmatism, or something similar. Yet certainly we must be careful in how those ideas are framed or how we navigate them. You also brought abortion into the frame of the ode or essay very close to the beginning–a difficult topic and one to which many preconceived notions are attached. Probably the most “dogmatic” thing one can lay on the table. I’ve spent most of the last 13 years trying to parse the language that accrues to abortion (and the way that it affects my world), as well as navigate the linguisitc minefields I’ve encountered in medically treating and educating my son. It may be that your essay is too short to meaningfully explore some of the very profound human issues that you raise. In which case, it becomes problematic for people like me who have devoted personal and, actually, yes, literary resources to such ends.
Disability is a big topic and I commend you for trying to discuss it at all, but you have to understand that your words have resonance both on a literary level and at the level at which real people live their lives. Your piece may have been heartfelt from your perspective, and maybe those who know you understand where you’re coming from–but to those of us who really live this with our kids every day, I do see the typical conflicted linguistic markers that creep into most discussions of disability. I am used to defending my son, so I can come on very strongly, and I would understand if you felt put off by some of what I said. But I think your being rather broadly dismissive of me is not justifiable, nor just. I’ve come to know that people feel free to speculate about the being, the otherness, the quintessence of persons with disabilities to a much greater sense than they do about additional categories of persons they might experience as “other.”
LIterature exists in a societal structure, amid connotations and denotations. Meaning may be constantly deferred, but we struggle with it nonetheless as it’s part of what we make literature out to be: it’s part of what makes it stick.
the real question is: how can the father of a child who literally might die any minute spend his time running for an office he will absolutely, positively-without-a-doubt never-in-a-million-years attain? because he is a religious zealot, an egomaniac, and (in the immortal words of charlie pierce) a dick?
Jennifer, I have some response to that. But, first, let me state for the record that I find Rick Santorum, politician, absolutely execrable and a first-class hypocrite: I despise his remarks on homosexuality and on healthcare, just to name two. I agree with charlie. I see myself politically as a progressive Democrat with a libertarian streak.
That said, Rick Santorum as father of a disabled kid, that I can relate to. These same questions were asked of Sarah Palin, and while hating her myself, I reacted strongly to them. When I absorbed the full impact of my son’s disabilities and realized how restricted my life might be, if I let it, I felt angry–not at him, but at society. I love my son and devote hours to his care and his medical management, and more hours to parenting. But I’m a person, too, and why should I have to give up who I am–entirely–because a misfortune with the metaphoric equivalence of a lightening strike came at me? I worked hard in college, used financial aid to enroll and graduate, was awarded graduate fellowships, and funded my way through an MFA program. I owe those people who believed in me something. And I owe it to myself. I’ve just received some awards that will help further what I’ve been able to accomplish on my own–they were hard-won, desipte the limitations on my time to fully engage with the literary community. My husband and I are working out our own accommodations to each other so that each of us may attain professional goals. My son’s health is not always perfect and he probably has a progressive disorder.
Rick and his wife have obviously worked out their accommodations to their respective careers and personal identities. He appears to be there for Bella–cutting short events to be by her side and having her with him when possible. Maybe he feels as though this is his moment–and, frankly, he won Iowa. Many people run for president knowing they have little chance of winning entirely, but the run itself helps to open up other opportunities and build campaign networks to run for other offices. Even though we hate his politics, who are we to deny him the right to preserve something of himself here? Would you deny that to me? Would you deny that to Emily Rapp, whose son has a fatal genetic disorder and recently wrote a piece for the Rumpus? She is devoted to her child, yet continues to write and make something of herself professionally. She’s doing her best to work out her own accommodations under difficult circumstances.
My concern here is that, in our desire to punish Santorum’s politics, any of us may make statements that apply more broadly to all children with disabilities and their parents. You should read the comments under the NYT piece that Heather Fowler posted if you want to see ugly in action. Should Bella be denied care because the money would be better spent on other children? That’s a common accusation, even when the parents are not infamous. Should my son be denied care? I was a strong proponent of single-payer health care until I began reading what people in this country really think about children with disabilities–and then I was scared out of my mind. Do I want the taxpayers of America deciding who should live and who should die? The current system isn’t perfect, but, currently, my insurer isn’t standing in my way as I pursue treatments. I don’t know how they see him, but they fulfill their contractual obligations to him.
I’m regarded as leftist by my rich right-wing relatives. They are fond of calling me a socialist. But none of them is the sentimental sob sister I am. Bella is both a darling child and a cross for her parents to bear. I think it is easier to appreciate their efforts from the comfortable distance of a few pews down from the main altar, as it were, the way I watch the Down syndrome kids when I go to Mass (I know – funny behavior for a socialist, isn’t it, but I can’t get enough of those Jesuits). I don’t do the heavy lifting. Once in awhile I have the opportunity to interact with a Down syndrome adolescent, and I find them touchingly normal and wish them the best. I can see that they are challenged by the ordinary problems of life – but eventually, if we live to be old, so will the strongest of us.
I imagine that Santorum and his wife are fighting the good fight on behalf of the unique being who is their daughter, Bella. So here’s what I want them to realize: in all the countries where we make war on people who are not bothering us, and that’s a lot of countries, there are little children just as dependent as their Bella. They will get the very shortest end of the stick if we attack them – say Iran. And no good will come of it for them. None whatever. So I hope he remembers that the “least of these our brethren” will suffer the worst (remember all those old people and sick people who were last to be saved if saved at all during Hurrican Katrina?) in any chaos of war.
Let’s remember the weak and not make war, okay?
And if that is socialist leftism, make the most of it.
Click here to subscribe today and leave your comment.