Wednesday, October 17, 2012

Not a hero

My husband and I used to alternately groan and laugh hysterically at a children's television show called "Higgleytown Heroes," in which roly poly cartoon versions of not only police and firefighters, but librarians, shop owners, dog catchers, sanitation workers and many other denizens of the eponymous town were adulated with cheers of "hero" simply for doing their job. Of course, certain professions like the police and firefighters regularly go above the call of duty and risk their lives in the service of others. But finding a lost dog or ensuring a patron can find reading material do not fall into that category. And yet, the show with its triumphalist music and eager scripts, persistently equated the life and death struggles of the archetypal hero with the mundanity of daily life.

Robert, however, loved the program.

And, maybe, from a child's perspective, the simple act of adults doing their jobs and doing them competently, or even well, could be awe-inspiring. I haven't been a child for a long time. What do I know?

Like many parents of children with disabilities, I've had my share of pats on the back from total strangers who observe me doing my job as a parent with my child under difficult circumstances. These accolades often take the form of calling me a "hero" or stating some sort of effusive admiration. I won't lie to you: these incidents are often affirming and I appreciate it from strangers. It's like getting anonymous flowers.

But does it make me a hero? I don't think so. I'm just doing what has to be done so my family members and I can move on with our day and our activities. What we're all trying to accomplish, aside from the complications of disability, is what's most important to all of us: seeing a museum, getting the groceries, going to school and to work, progressing with our careers and our studies. And that includes Robert and his goals. So it's frustrating to have congratulations for doing the dirty work or enduring the unfairness with a smile, but not having the regular and consistent supports that help all of us accomplish something outside of, or in spite of, disability.

And that includes Robert and his need to go to school, communicate, and enjoy the company of his friends--all aside from his disabilities. The problem is, these things cost money or require societal investments, which are certainly not dispersed equitably.

My husband and I talked recently about the wild misperceptions our contemporaries, including some family, have of the supports available to children with disabilities and their families. We've had the impression that people confuse the Medicaid waiver system for children with disabilities with the apparently extensive supports available under Medicare to the elderly, especially those facing the need for facilities care and home supports.

Medicaid ain't like that. The Medicaid waiver system in Maryland, and in many states, is a hot mess. Like many states, Maryland has hodgepodge statutory guidelines that allow waivers for various disease categories, but have no statutory trigger for determining the global impact of the child's disabilities on their health, education and general welfare. That translates as, if your child has one of a few more common childhood disabilities, you get a waiver. If your child has no diagnosis or lacks the RIGHT diagnosis, your child only gets a waiver if his or her life is in danger. Which is why Robert now has a waiver. Finally. Because he's now at risk for starving to death because we can't get enough calories in him during the day.

As you can imagine, this rabbit's warren of rules and programs creates unequal access to medical and therapeutic services, as well as lays a faulty foundation for educational success, among a state's most vulnerable children. Let alone the tremendous financial burden shouldered by the families without access to a waiver, but with a child like mine with catastrophic impairments. The skyrocketing rates of health insurance and equally stratospheric increases in the costs of non-routine medical care ensure that no family, no matter how well off, can afford the lifetime tab for a child with severe disabilities. As we've recently discovered, it doesn't matter how good your insurance plan is. Or how much you sacrifice to find an insurance plan that might be.

Which is how my husband and I ended up complaining bitterly about Medicare. I will admit, right up front, that we may be, ourselves, misinformed about how much support for home and facilities care is available for aging and sick seniors. We've watched our own family members make the difficult decision to choose facilities care for an elderly relative, rather than provide care at home. I don't know that we know all about it.

But I do know that the states regard a parent's care for a child as, in part, a legal responsibility, whereas the reverse is not true. So, in the end, I'm not hero--the buck will always stop, not on Truman's desk, but with the law.

Yet maybe this is why strangers and relatives alike want to tell me I'm a hero: what ultimately binds any of us to the intensive care of a child with disabilities or an aging parent is a sense of moral and ethical obligation that sets aside issues of cost and personal freedom.

Still, I reject the label, and not out of modesty or in the service of completing the deferential parental trope that says my own child's struggles are far more heroic than my own. I'm just tired of living with cognitive dissonance--having people I know well and don't know well tell me I'm a hero while at the same time, it seems, everyone and every social structure often takes a step backward when it comes to ensuring that my son not only stays alive and thrives, but can do so without demolishing the family of which he is a part.

We've been watching a lot of Star Trek in my house lately. And I need to look for a different way to approach work. So I'm putting together a CV that at times seems sturdy, at other times built with both new and ancient timbers, a relic of what I've gained and lost from this long struggle not with Robert, but his illness, and the theme music of an old TV program that approximates the hero's quest to boldly go where no one has gone before feels like it's mocking me. Whatever I've done with my life may not be enough to get me where I need to go.

So please don't call me a hero and walk away feeling you've done your good deed for the day. Think about what you can do to take a step toward leveling the playing field for children and adults with disabilities and the families who care for them, whether it's voting for something that may be in their best interests (if not your own), contributing money or time, correcting someone else when they rant about freeloaders and the entitlement system, recognizing the constraints that parents of disabled children face in the workforce, or stepping in to run an errand or sit with a child for an hour or two. I'm not a hero, but you could be one.

Monday, September 24, 2012

Let's start, or not start, with an announcement

Robert at Gettysburg
At Arlington National Cemetery, the rows of graves with uniform headstones, all in precise lines, align and realign themselves, moving within your peripheral vision as you walk by. An odd dynamic in what is otherwise a static place: the last resting spot for over 400,000 soldiers, politicians, and other dignitaries. Each small white stone forms a mark on green grass, each so many feet or inches separated from the one to its left, right, front, back. The geometry creates an optical illusion for pedestrians, the headstones breaking in waves, lines at parallel and diagonal, patterns shifting. Each person buried here connects, one to the other.

Edith and I visited the cemetery after returning my rental car at National Airport, just a few metro stops back along the Potomac. Edith claims she's never been, but I don't know--I may have pushed her stroller under those trees, along these paths at some point in the past. I try to go periodically, I wish I could say to honor the dead (although honor them I do), but what I want from Arlington is the view from the Custis-Lee mansion on the promontory above the river.

We walked (and you walk in Arlington, you really do, over 624 acres) on roads that connect the clusters of plots to the eternal flame that marks the resting spot of JFK. Just a hundred vertical yards or so below the mansion's portico. Along the wall of a sweeping granite plaza are inscribed a cluster of quotations, mostly from the President's sole inaugural address, culminating, of course, in the famous "ask not what your country can do for you, ask what you can do for your country," but before that rhetorical note sounds, another chimes in: "now the trumpet summons us again, not as a call to bear arms--though embattled we are--but a call to bear the burden of a long twilight struggle, a struggle to bear arms against the common enemies of man: Tyranny, Poverty, Disease, and War itself."

That last was the resonant rhetorical ping! of the day, it being Rosh Hashanah and all. The trumpet, the ram's horn. From the church militant to the church triumphant, as the minister said of those who had died in the congregation of my childhood. The call to arms. Lying back in the arms of the fathers. All of this diction mixed in the back of my head. Disease and a long twilight struggle.

We clambered (believe me, the appropriate term) up the long concrete slabs that made steps for giants up the steep hillside, under the trees, past row after row of modest white headstones dotted into infinity, to the broad front porch of Arlington House. From Arlington House, you can see the entire city of Washington DC receding into the distance on the far shore of the Potomac. The city itself laid out along a grid equally as unforgiving as the geometry of Arlington.

No more than the city can be captured in one sweep of the eye, the plots at Arlington on the hundreds of acres can't all be seen at once--and there are only upwards of 400,000. If you go to Arlington, that number will seem immense and unimaginable and your throat may constrict as you consider the toll of war. That would be an understandable human reaction.

There are 3 billion nucleotides on each strand of human DNA. So many nucleotides form a gene, so many genes dot a chromosome, and we all have two chromosomes to prevent genetic disaster, or at least stave it off. On one of his chromosome 2 copies, Robert inherited a defect from me on the PRKRA gene. One nucleotide switched out for the wrong one that encodes for the wrong amino acid and makes the wrong protein. On the other copy of chromosome 2, Robert has a de novo defect on PRKRA--one nucleotide switched out for another, but in a different place than the coding error I gave him. Most likely, our geneticist said, the de novo variant was the result of a gamete transcription error and that gamete from my husband was the one that just happened to unite with my ovum. A one in 3 billion chance happening.

Disease resulting from errors to this gene is currently called dystonia 16, a gradually progressive illness, of which Robert is the 9th reported case in the world, the first in the U.S. Robert's symptoms, most likely because of the de novo variant, are worse than any of the other 8 reported cases.

On August 3, a Friday, I was driving in Vermont on my way back to my parents' summer house, when Edith insisted we stop for creemees, and a good thing we did or I wouldn't have answered my phone when it rang and the results of Robert's genome sequencing would have had to wait until Monday.

While I'd been waiting--since January--for these results, I wondered what it would feel like or how I would react when the news came. I imagined myself going weak in the knees and crying, because, really, that's all anyone could imagine. Of course, that's not how it went down. I was elated. I was grateful to Rare Genomics Institute, to Jimmy Lin, to all the donors I know and don't know who made the sequencing possible. All of this has been a gift, to finally know, if not what we're dealing with, then a map of the terrain.

This elation continued through my 30th high school reunion--that night after hearing the preliminaries on a cell phone at a creemee stand in the Champlain Islands, I had dinner on a promontory looking over Lake Champlain with several of my closest girlfriends from high school. A harvest moon came out, large and golden-orange trailing down the lake surface, as we sat in Adirondack chairs, all in a row--and Cheryl asked if we should climb the ladder down the cliff to swim and Catherine said it was not recommended after a few glasses of wine. Let's not start the reunion tomorrow with the announcement of an accident. By then, of course, I'd told my friends about what we'd found, I'd told them at the beginning at the blue picnic table and we'd talked about it all evening, and all of us were happy with wine and water and the harvest moon.

All of it, for three weeks, was a festival. We were on vacation. We were traveling. We were talking to old friends and to relatives and it was Big News.

But receiving the news, the announcement, is different than taking it to heart. We drove back to DC, down the long change in elevation from the old glacial lake and back to sea level. And I woke up, finally at home after 3 weeks, in the middle of the night. Maybe it was raining, maybe it wasn't. But I woke up in a state of shock--maybe I'd been dreaming, maybe I hadn't--and in an awful cliche, not my entire life, but images and snippets of the last 14 years were flashing through my mind and I couldn't make them stop--Robert at the table at our old house, now at our new one, images of the school bus, holidays, trips, hospitalizations, all of it. In each image, the disease had marked him in some different way. That seemed to be the point of the slide show projected on the frontal lobe of my brain: each point at which he looked different, slightly different than before, connected to every last one of them. Like the blue screen on a computer after the device warns you in tight white type that a complete data dump has begun and then the number of bytes scrolls by rapid-fire, faster than your brain can even read--that's what it was like. Recovery error. Or a twilight sleep. Without giving it any thought, I found myself lying face-down on the carpet of my home office and sobbing.

Since then, all of us have been relieved, but exhausted and a little fragile.

Arlington House, or the land around it, was seized by President Lincoln during the Civil War. General Robert E. Lee was the current owner of the property, and Lincoln wanted the war dead buried in Lee's front yard. For the rest of his life, Lee would have to look out over the dead from a war that administration felt he could have prevented. Standing on the portico at Arlington House, in the distance across the river, Arlington Memorial Bridge makes a sight line directly to the Lincoln Memorial. A grudge.

Robert was conceived on the first evening of Rosh Hashanah, which represents the beginning of the world. It was also Friday the 13th. For years, I convinced myself that conception must have happened in the wee hours of the 14th. Because, otherwise, I would have to believe in superstitions I never held to begin with. In cliches or something approximating them, like a reminder that even in the beautiful garden of your dreams, the one overlooking the river, a serpent can slip in.

And then you awake to find someone has planted row after row of white headstones in your front yard, each of them so many feet apart to the right, to the left, back and in front.

Edith asked me why the stones were all the same. I told her it symbolizes all of us equal in death.

Opposites are supposed to attract, but patterning comes from the recognition of likeness and this searching for equanimity makes lovely and serene what otherwise would be fearful:

The Energy - the Faith - the Devotion
Which we bring to this endeavor
Will light our country
And all who serve it
And the glow from that fire
Can truly light the world

Sometimes the white stones seem to glow against the green. What I can say is that we asked to look down into the patterns of the genome, the ACGT invisible to us, trying to find the one letter in tight white type out of place. 

How one reacts to a discovery of that impossibly small magnitude is debatable, one of any understandable human reactions. It's a matter of interpretation. Maybe love can be so strong that the making of a single person from two bends the laws of biochemistry such that like must have like, even to the last detail. Or maybe it's just a coincidence.

What I can say or will be able to, or, really just want to say is that, in the end (and at the beginning and in the present), we served our child with faith and energy and devotion.

Saturday, July 14, 2012

Part 3: What Health Care Means to Me, an unending series of spare parts

It's such a delight to be proved wrong! Really, I was going to post an update after the Supreme Court decision on healthcare, but then I lost power in the derecho storms in the WDC area on June 29 and we were nomads with Robert for three days. And, well, I've been catching up with my life ever since.

The power outage reminds me of my friend Renee. Some years ago, we were sitting in the sun at a small wrought iron table, having lunch outside a restaurant. We talked about Robert and some complex matters in her own family. And she turned to me, in the quite urgent and mostly serious way she has (if you know my friend Renee), and grasped my arm with her hand and said, "at least we're not refugees, running from our homes. That would be worse. That would be the worst." Or something like that.

At the time, I thought she was probably right. But having practiced my cowboy driving skills for hours on end, motoring through Washington and environs around downed branches and wires and major thoroughfares along which 50 percent of traffic lights were out, I don't know if I agree with her any more. I became used to living on the road surprisingly well; in fact, I've kept an evacuation bag for Robert in his closet ever since 9/11/01. It made sense, the way a lot of things made sense right after 9/11. The green backpack is still in his closet, but in the last 3 or 4 years I've gotten sloppy about refreshing the medication and other supplies in it.

While I played the role of a Pepco refugee, if only briefly, I had a purpose and a direction: find food, gas, air-conditioning. Life may have been stripped to its basics, but the day was laid out before me. The problem with my ill-considered analogy is that refugees can't go home again, whereas I was asleep in my clothes on my very own bed three days later.

Round and about, eventually, though, I will come to my topic, which is healthcare. The thing about the 2012 Great Pepco Outage is that no one rambled on about who deserved to have power and who didn't deserve to have power. People may have cursed their absurdly fortunate neighbors, just there, across the street! who did have power, but no one really thought anyone had earned the right to have power or not. All we were conscious of was the lack of it. Acutely conscious of. And what it meant not to have it. Even the people who did have power were pretty good about sharing it, pitching in, doing their part. And I'm assuming those people sleeping under dry sheets in their air-conditioned chambers even thought to themselves before nodding off, at least, there but for the grace of God go I …

IT WAS ALL RANDOM. We knew that, we who were without lights and we who had no working electrical sockets. An the lack of power affected even those who did have power: how many supermarkets were shut down, out of milk (though stocked well with toilet paper, I imagine)? How many restaurants were closed? How long did you have to wait in line to buy gas at a working station? How many near-accidents were you in trying to exit your neighborhood at a non-operative traffic light while no one bothered to treat it as a legal four-way stop? Was your child's daycare center open or closed? Life was disrupted for everyone.

At least we weren't talking about merit and basic human needs. That's the worst.

A few days ago, I saw this posted on my friend Sara's Facebook feed:
"Dear portage little league parents discussing Obama care next to me: the fact that you drove here in an escalade makes your opinion on who deserves insurance meaningless. I do think this means you need to take the Jesus fish off your car, though."
This is the most important statement I have ever read on the problem with healthcare in America. It just says it all.

Because that's the upshot of all our arguing about this ridiculous subject: healthcare isn't a human right, it's a fellowship to state college. As for WWJD, well, opening my own Bible to random passages in Luke, I see immediately words such as these: "He who has two coats, let him share with him who has none; and he who has food, let him do likewise," and "give to every one who begs from you; and of him who takes away your goods do not ask them again." Right. Same Jesus who was known all over Palestine for healing the sick. I guess the people talking about healthcare in Portage had to drive to Little League in one Escalade because they'd given the other away to a homeless man.

A few years ago, I read most of T.R. Reid's book, The Healing of America, in which he suggests that universal healthcare arose in other countries through some sense of national commonality or other community sensibility: the Brits pulled together after WWII, the Germans rallied round the idea of the common German man (or person, I suppose), and I don't recall what drove the other countries' reasoning. Fairness, I suppose. Cost savings. Desire to improve quality of life. You know, all that reasonable stuff.

Well, not here. In his first chapter, Reid says, "Americans generally recognize now that our nation's health care system has become excessively expensive, ineffective, and unjust." Note that word "unjust." Read the status update above again. "Unjust" because, apparently, that's the way we like it. In his conclusion, Reid notes that "the American reliance on private, for-profit health insurance companies for the bulk of medical coverage is in accord with American values of capitalism and freedom."

As Americans, we value not only capitalism and freedom, we also value merit and "hard work." Because our health insurance system developed as a jobs benefit, we have become accustomed to associating access to health care with the ability to hold a job. People who can't hold jobs don't deserve "benefits" like health care. Because they are lazy, apparently.

Or at least that's the way Americans tend to think when we think at all. Most of the time we're too busy being independent pioneers and starting our own businesses and raising our children according each to her own individual belief that we really don't have time to think. Or when we have time to think we mostly think that Americans who whine about health care are lazy or have government jobs, otherwise known as "sucking on the government teat." Or some less polite spelling. I see that in comment threads all the time, which my husband constantly tells me to stop reading.

Apparently, though, it's OK to suck on the corporate teat because that's what most Americans do. Personally, I don't see much of a difference: what makes dependence on corporations and the jobs and benefits they supply any better than some kind of dependence on government? Dependency is dependency, corporate or otherwise. I thought we were a nation of freedom-loving independent contractors, hacking through the wilderness, speaking our minds, being independent and free and all that. Oh, wait. I forgot. Independent contractors don't get health insurance. It's in the Constitution.

So we'd better amend the statement above to say, "People who can't hold corporate jobs don't deserve benefits like health care."  Even so, that gets complicated. Do all the people who work for MacDonald's get health insurance? That's a corporation.

The whole chain of logic now becomes, as we used to say in high school in the 1980s, increasingly bogus. The freedom-loving people who start their own businesses or earn their own living their own way have an awfully difficult time securing health insurance. But most Americans don't understand that or understand why because corporations and insurance companies make it impossible for us to understand the costs attached to health care of any kind.

Americans who receive insurance as a job-related benefit generally pay very low premiums. COBRA is a shock to the recently unemployed as it reveals the true cost of insuring a family at a minimum of $1,500 to $4,000 per month. That's a second mortgage. Or a second and third combined.

Insurance companies compete for corporate clients by trying to figure out how to make routine care seem extremely cheap to people with minimal health problems, while masking the cost-sharing involved for complex health problems. Want to see a doctor? It's only a $10 co-pay under our plan! Kiddie vaccinations are free! Generic drugs, free the first 3 annual fills! Most brand-name drugs start at $50 per fill! Free generic antibiotics! Need to see a specialist? $30!!!! (Try figuring out what it would cost you to have your gall bladder out or what a prosthesis might cost were you in a car accident, or physical therapy, etc., etc., etc.)

What does it actually cost to see a "specialist"? Well, that depends, but in the DC area, visiting a cardiologist will set you back $350. But if you have insurance, paying only $300 per month as your "share" of the premium, it costs $30. Want to see an internist, retail? About $150 per visit.

A doctor friend of mine was appalled by the attitude of some of her patients when her practice decided to stop accepting insurance altogether. The practice did, of course, give you a form you could file with your insurance company to recoup some of the cost, you know, the way insurance used to work in the 1970s. But, but, but, her patients complained, what do you mean I have to pay $150 up front? It's too expensive. As my friend pointed out, these were the same people who went to Nordstrom's every weekend and bought $300 shoes.

We expect health care to be cheap or free. It's not. And the very system we laud for understanding how much we value capitalism and freedom works intentionally to make the costs of our system opaque.

Ever want to cause a stir? When your doctor tells you you need an non-urgent procedure, ask him or her how much it will cost. Your doctor won't know. He or she will tell you to ask the staff in the front office. You will ask the front office staff and they won't be able to tell you, either. In fact, they'll look at you with an expression of shocked indignity. They may even look hurt. Why would you want to know how much this will cost? Or what your share of the co-insurance will be?

Um, let's see. The last time I gave a green light to a procedure for Robert, botox injections, the cost to me (with an excellent insurance plan) came back at about $1,500. The entire bill was over $2,000 as a CSF draw for a genetic test was included and I could never figure out how to separate the genetic test from the bill because, frankly, it wasn't spelled out with that much specificity. Robert hadn't had botox treatments for spasticity for a long time--years, in fact--and I had no idea how much the costs associated with it had risen. (BTW, the entire retail cost of this little procedure was over $30K.)

Robert had botox injections last October. My insurance processed the charges before Thanksgiving. Children's Hospital sent me a first bill early in December. Robert was hospitalized with pneumonia just before Christmas and I never got around to working on medical bills until January. In January, I wasn't sure how I was going to manage paying this particular bill, so I sat on payment for a little while. In early February, one of the nastiest collection agencies I've experienced called me on behalf of Children's Hospital and demanded that I pay the bill.

And my doctors wonder why I want to know how much things are going to cost.

I'm now engaged in a lengthy conversation with one of the specialists I see, trying to determine how much a procedure I need will cost me out of pocket. The first reaction was surprise. The second was to tell me that I would need to contact my insurance company. I politely pointed out that I didn't have access to rate and diagnostic coding information, nor did I have access to the contract rates that this office sets with my insurer. Which they didn't even appear to know. I mean, this created confusion. They could tell me how much they would bill my insurer, which is not the same as the contract rate, and suggested that I budget at 15% of that. I said, as nicely as I could, that that didn't work for me. And I also pointed out that the surgery charge was only part of it. There was also going to be a facilities fee, an anesthesiologist's bill and a bill for the anesthesia drug itself.

What I wanted to say was: I have to sign a form telling you I promise to be financially responsible for these charges before you operate. And you want me to sign this form without explaining to me exactly what the charges will be. And if I fail to make payment in what you consider to be a reasonable time frame, you will harass me with a collection agency until I do. So please don't look at me as though I'm insane when I want you to explain what the medical treatment I'm purchasing from your office is going to cost me. I don't walk into the Apple store and sign an agreement to buy a computer without knowing the price, bring it home, start using it, and then get a bill--and if I express shock at the amount I'm asked to pay be told I can't take it back or trade it in for a cheaper model.

Who deserves to have medical care? Everyone. Our dependence on corporations to both provide us with access to care through the form of insurance, and health insurers to then administer that care results in a profound ignorance on our parts about what that care is worth and how much it costs. That's not capitalism in action. Capitalism in action happens when there's adequate price transparency. Only then can consumers apply the controls of supply and demand.

If we all had to apply the controls of supply and demand, maybe we'd have a bit more empathy for those people who can't afford a health insurance policy because they're self-employed or can't afford to pay retail for a doctor's visit or a procedure. Have you ever bothered to figure out the actual cost of your insurance policy or the actual cost of a procedure? It's more than you can afford, too, even if you have a pretty good job.

Obamacare takes a running start at equalizing the cost of access to an insurance system. Because that's what we all said WE WANTED--we didn't want "socialized" medicine where everything is "free." (As my daughter used to say, Hello, you people out there!) We wanted an insurance system through which, we were certain (as in My Little Pony-land) everything is paid in candy corn and rainbows. The majority of us, let's face it, don't have any idea what we're talking about when it comes to the retail cost of our policy or our medical care.

None of us have any idea, either, how our electricity arrives at our home or how much it costs to run a power company. We just know how pissed off we are when the lights aren't on and the A/C doesn't work. And we want it back on, now.

We all need to keep in mind that, just as the electric grid goes down in a random pattern, the costs of health care are causing job-related benefits to be shut off in random patterns: if you're a great employee, but can only work part-time, why can't you have benefits? Just because you're a janitor instead of a CEO, why can't you have benefits? If you want to start your own business, be a real "independent and free" American, why can't you afford coverage? Who works harder? Who works the most? When we increasingly believe that people have to buy a postsecondary education that they can afford, why do we still attach premium health benefits to top jobs filled primarily by people with Ivy League degrees? Why does someone who works for a larger company than your lean, mean, fighting machine of a company pay less for their health insurance plan than you do?

When I overhear what people say and write about health care reform, it's as though I'm listening to people say that Pepco should be deciding who deserves to have air-conditioning today.

Monday, June 25, 2012

Cake or Death: what healthcare means to me (pt 2)

We live in a society of unparalleled contradictions: if I could make a Venn diagram of conservative positions related to healthcare and "liberty," I imagine I would find significant overlap among persons who claim to act from a Christian imperative, deplore abortion, but are quite willing to apply and endorse the use of the verb "to choose" with regard to the manner in which they would prefer to conduct their own lives. As in, "I should be able to choose not to buy health insurance," as though that sort of bizarre statement has any connection with reality or responsibility, personal or otherwise. It is an act of gross personal and societal negligence to "choose" not to purchase insurance (as opposed to being unable to afford to purchase insurance or to afford adequate insurance). Why? Because by doing so, you are demanding that other people shoulder the bills you will inevitably incur when you require emergency room care, unless you carry a card in your wallet that says you prefer to bleed out on the macadam after your car accident. I suppose it could be an option on our driver's licenses, much as one can check off a box indicating a willingness to be an organ donor.

I hate to tell you all out there who figure you could shoulder emergency room bills and rehabilitative care bills post-car accident: your house isn't worth as much as you think. Or post-stroke or post-heart attack because we've all decided that unlimited consumption of high-fructose beverages is a "choice" to which we are as entitled as much as the right to choose not to have health insurance. Talk about the soda industry cheapening the phrase "give me liberty or give me death."

Somehow, I don't think Patrick Henry could have imagined the complexity of modern society when he said, "give me liberty or give me death." Or people today think Henry's statement was merely metaphorical--what, you mean if I choose not to have health insurance you're really going to ask me to choose actual death? Sometimes I feel we're all living inside an Eddie Izzard routine, "Cake or Death?":

Myself, I choose cake. L'chaim.

Yes, yes, yes, being an intellectual myself, I get it--the law student/former English major rush over discovering that, in fact, a close reading of some section of the Constitution allows one to legitimately argue that Congress cannot regulate inactivity. But what does that have to do with living in a moral or ethical society? Or have we all given up on the idea that law establishes ethical frameworks for society? I guess we have--we've come a long way since Aristotle, baby.

And let's get back to that close reading issue. I'm neither a lawyer nor a legal scholar, so I can't offer much insight on the ins and outs of the Commerce Clause, but my graduate training was in the history of ideas, semantics & semiology, and historicism. First of all, the Constitution was written during a period prior to the establishment of modern syntax and, more importantly, modern punctuation. So understanding its foibles should take into account that interpretations predicated on modern syntax and modern punctuation rules do not apply. Second, the Constitution was written by people who believed African Americans were an inferior race and women were the inferior sex. Neither of these moral defects institutionalized in the original document have been thoroughly and completely addressed by modern society, which makes it difficult for some of us to adulate as gods these flesh and blood white guys with extensive property rights.

Third, the Constitution was written in the 18th century when assumptions about society and human liberty were quite different than they are now. Why is there no right to privacy? Because the word was defined differently and not even understood conceptually the way it is today. Have you ever walked through 18th century buildings? Yes, bed chambers have doors, but rooms often open up one upon the other. The concept of the "hallway" that increases square footage and building expense was just coming into vogue. Rich people were still dressed and bathed by servants and parents and children in lower socioeconomic orders usually bunked all in the same room. What we think of as "personal space" and "boundaries" were foreign concepts to these people. We were not that many years away from a time when people publicly urinated and defecated in the public streets. As a medievalist friend of mine once noted, city gutters were considered public toilets and it would not have been considered unusual to wave to your friends passing by while you had your drawers about your legs taking a dump.

Why doesn't the Bill of Rights make mention of a right to health care? Well, let's go back to an historicist understanding of the document. Your local barber often doubled as a physician and bleeding was still the treatment of choice for fevers and other illnesses--the idea being that toxins in the blood caused illness and you could reduce them by reducing their volume within the bloodstream. Medical science has lately come to understand that that was not utter foolishness and it did cure people, but at the very real risk of killing them. We have better options today. Furthermore, no one even understood what DNA or genetics were. Mendel's paper on genetics wasn't presented to the scientific community until 1865. In 1787, homeopathic remedies were relied on by most people, and disease killed more people than it spared. You got sick, you relied on what we now understand as the immune system and your genetic makeup to get better. Many medicines were toxic.

Life was cruel, brutish, short. For most diseases, care was primarily palliative. Jenner's development of a crude vaccination for smallpox was concurrent with the drafting and signing of the Constitution. And his work was entirely experimental.

Healthcare as we know it did not exist. Thus, how can we have expected the Framers to have had any sense for the extraordinary trajectory of technology? I mean, even the Industrial Revolution was a century away.

All of which pondering led me to tell my husband the other night that I was gravely disappointed to be living in an American moment in which "strict constructionism" is the watchword of the legal world, more particularly, the Supreme Court, as though the Framers, honestly, would have preferred that we live in the 18th century in perpetuity, the American Hasidim. I was willing to walk out on the tightrope between treason and love of country (the country I'd prefer to live in) and accuse the Constitution itself of being a ridiculous document, hardly worth of the adulation we're expected to confer upon it. God didn't hand this scroll of paper to anyone. I had read somewhere in Slate, I argued, that the early Supreme Court justices did a power grab and actually have far fewer powers under the Constitution than they allocate to themselves today.

He merely pointed out that the problem with the Constitution is related, really, to the flawed people we appoint to interpret it. Is it a living document or an historical relic we interpret as we would the Shroud of Turin?

Which is why the Supreme Court today is such a ridiculous institution, barely deserving of our respect. Its focus has been persistently on narrow interpretations of an antiquated, outdated document hobbled by its Framers' inability to anticipate, let alone understand, how the world might change. We have only their fleeting reassurances within the document itself and the Federalist Papers that they intended it to be a living document, a global intention that is little served by a judiciary determined to keep us all living in the Dark Ages of 1787. Something like that Texas legislator arguing during a debate about making English the official language of Texas, if English was good enough for Jesus Christ when he wrote the Bible, then it's good enough for the people of Texas. And I mean no disrespect to Texas, which as friends and recent reviews of Gail Collins' book have pointed out, has some of the best scientific research facilities in the country and an active and rich arts and cultural scene.

Do I advocate doing away with the Constitution altogether? No, of course not. That would create social  chaos--much as the Justices striking down the individual mandate would throw an industry that represents 1/6 of our economy into chaos, send tens of thousands of hardworking Americans to the brink of bankruptcy and endanger the lives of millions of Americans by letting the insurance companies descend into their patented institutional madness about the relationship between medical necessity and the limits of business contracts.

But it seems to me that this election is about whether we'd like to live in a modern society or whether we want to become the American Hasidim (or the Amish or a secular version of any other fundamentalist society). Because "strict constructionism" is just another version of fundamentalism. And just look at what fundamentalism has brought us. Misery. People taunting helpless school girls, blowing up buildings, arguing with their neighbors. Even the Amish, known primarily for their sage homilies and incredible sweets, are at each others' throats.

As Americans, we are entitled to "life, liberty and the pursuit of happiness"--but just how are we to understand that? Is liberty truly unfettered individualism? It would seem not. And no one can guarantee us the acquisition of happiness, only its pursuit. At what point does the law cease to become a mere exercise in bloodless theory, devoid of contextualization in the moral and ethical world of human affairs? Isn't the Bill of Rights set squarely within contextualization? Isn't that the point?

I've been very hard on President Obama in this blog relative to my perception of his engagement with the significant moral and ethical imperatives raised by healthcare reform. This NYT article gave me some hope that he truly was engaged, although the long-time DC area resident in me worries that these are just trial balloons sent out by the President's emissaries. If I thought this President would really continue to go to the mat for Robert (and my family and all U.S. families), I would go to the mat for him. But I still don't have a definitive word from the White House.

Cake or death, indeed. I choose cake. I choose life.

Wednesday, June 20, 2012

What Health Insurance Means to Me

During this election, I imagine very little will be said about healthcare, the only exception being Romney's undoubted promise to overturn "Obamacare," whatever that actually may be. Hovering behind him may be Paul Ryan, like the swordsman who beheaded Anne Boleyn, distracting our attention with homilies about hard work and shared sacrifice before he swings the arc of his sword behind us, neatly severing our intelligence from our primordial gut responses to the appeal of American individualism. He'll mop up our blood with Medicare vouchers and toss them to the crowd.

Yes, I've recently finished Hilary Mantel's Bring Up the Bodies.

The Supreme Court will proclaim whatever it is it will proclaim in all its fusty splendor with its tottering protocols behind that magnificent white marble facade. And the whole spectacle of the election will move on to the economy. Stupid. Right. Because health insurance has nothing to do with the economy: it exists in its own magical garden guarded, like a medieval virgin, by unicorns and fairies insisting that a market economy intuitively knows how to protect our freedoms to see doctors of our choosing.

What I love about this country is the way we personify the economy and the stock market as though either had agency or intent. A better comparison might be the clustering and manic reproduction of bacteria or viruses.

Another part of the current American confabulation of fiction and history that I admire for its sheer willful disingenuousness is the adulation of Ayn Rand's major novels published in 1943 and 1957, The Fountainhead and Atlas Shrugged, respectively, because, really nothing about our country or the world economy has changed much for over 50 years. It's one thing to suggest that these are good reads, quite another to conclude that Rand's fictive reaction to the economic complexities of the World Wars has significant bearing upon today's problems. Insert here something about history being doomed to repeat itself. Or something about how if Don Draper doesn't change, how do we know America changes?

But I'm not here today to argue economics with Randians. Really, I'm not going to pretend that I can.

I will point out what the President is loathe to point out, however, which is that the reason we don't use Medicare vouchers for seniors and persons with disabilities is because we kind of already had the experience of those groups being uninsurable, which is why Medicare was developed--to ensure and insure the people left behind around the time Rand was drafting her books.

At Children's Hospital this morning, I had the curious experience of having to tell Robert's doctor of physical medicine that, no, despite the fact that I was insured, I could not proceed with additional botox or phenol injections until Robert's Medicaid waiver comes through sometime in the fall, we hope.

My health insurance is very, very good. It "covers" those procedures at 85 percent of its contract rate with Children's for the drug itself, the physician fee, the operating room cost (including nursing, equipment, recovery room), the anesthesiologist's fee, the cost of the anesthesia, and, well, I think that might actually be it. But when all is said and done, my share of the costs will be about $1,200 or more. Over the last several years, we've spent much of our money set aside for procedures for Robert and I'm not in a position to pay that, especially if a Medicaid waiver (which will cover the cost of my coinsurance) is around the corner.

But what will waiting a few months mean? One of Robert's adductor muscles is twisting his left leg inward continuously, putting strain on his hip musculature and bone structure and slowly damaging his skeletal system. Botox or phenol will freeze that muscle and alleviate strain on his hip.

Last week, I read an article, probably in the New York Times, that explained that the conundrum I was experiencing with my insurance plan was, in fact, not entirely out of the ordinary. Because, you see, that's the market at work: the market knows that if it just disincentives me from using my expensive healthcare plan--like my kindly Uncle Mitt patting me on the shoulder and asking me how much Robert's comfort and life are really worth, really now--and if I don't listen, it just twists my arm tighter and tighter behind my back, eventually I will realize that I need botox injections for myself just to be able to use my arm again so that I can help my son, kind of like when the flight attendants tell parents to put the oxygen mask on themselves first before putting one on their child--if it just disincentives me from using my plan I will eventually be forced to give in and keep paying for a plan I can't fully access. Really, I should be grateful to have insurance at all, even if I can't afford to use it.

In a film version of the American healthcare system, I'm not sure whom we should cast as the Market: if it's a comedy, probably Danny DeVito; if a drama, probably Christopher Walken. Jeremy Irons should really play the Insurance Industry because he's doing such a great job playing the Pope in all his petty, mercurial, and vicious splendor in Showtime's The Borgias.

I will not lie, though. Having a great insurance plan has certainly made me feel entitled to benefits. And that's another American conundrum: entitlement. Very fashionable these days for politicians to deride entitlements for those who pretend to have needs, whereas it's perfectly fine for people who have few needs to be entitled to whatever frippery they fancy. I'd love to know what the difference is between entitlements and rights. No, not the actual legal or policy definition. The popular definition. The what-we-really-mean-when-we-use-that-term definition.

Apparently, healthcare is not a right, but an undeserved entitlement? We don't have a right to get better or be whole, but we do have a right to be sick and stay sick. Which is why we don't want "Obamacare" because that strips away our right to stay sick.

It would be really nice if the President would step in and explain what healthcare means to him, but I'm not sure he knows. He wanted to hand this off to Congress, where it would slowly die (because if we have the right to be sick, we have the right to die--but not if we cause our own death, only if we stubbornly refuse to accept treatment for the sickness that will surely kill us), but a lot of people who elected him surprised him by insisting that, well, we really wanted some fairness and equity with healthcare and insurance. So he found himself engaged with a subject that he had no significant interest in or dedication toward. Hillary's the healthcare ninja. Or she was before they gave her State.

I know what healthcare means to me: the peace of mind of knowing that my children (if not myself or my parents) will be cared for if they become ill. That I can take advantage of all the technology and services and medical advances that my tax dollars already support--because you and I pay something for medical research, federal and state grants to universities, research groups, pharmaceutical companies, for loans and grants to provide some sop of subsidy to the education of doctors and nurses, for the tax-free status of the universities that educate them. Yet, for some reason, the allocation of resources for healthcare has to take place through venal middlemen.

It's easy to start pointing fingers of blame here: Paul Ryan, Romney, Obama, Congress, the insurance industry, doctors, whoever it is (and it must be someone--seniors, the disabled, my relative who has MRIs ordered when his big toe hurts) who's "driving up the costs" of procedures and drugs and whatnot. The thing is, the healthcare system isn't just doctors and patients and the insurance industry. It's the people who manufacture medical devices and drugs, the people who research and invent them, the colleges and universities who train these people, the salesmen who know the product inventory well enough to tell you you need a certain type of wheelchair or walker. It's a whole lotta jobs and a whole lotta money and capital. We live in a capitalist society, increasingly less buffered by anything resembling a social contract with its citizens, and all of these people are among our friends and neighbors, all of whom have learned to make a living by figuring out their piece of the pie. That's the American way. Or so I've been told.

I've lived in Washington DC for over 20 years. Trust me on this. My moment of awakening to the glories of our capitalist enterprise came the day I was seated at the reception desk of the Senate Agriculture Committee and a lobbyist for the Fertilizer Institute walked in and handed me his card. If there's a job for the lobbyists for actual shit in this country, there's a job for you and one for me.

Look, medical research and higher standards of care are the moon race of this century. Whenever I sit down with doctors or durable medical equipment vendors or pharmacists, I'm stunned by the sheer ingenuity of this country. Forgive me, I was raised a Christian, but for those who hunger and thirst for adaptations and answers to their medical problems, let alone righteousness, there's some kind soul out there who's spent his or her working years thinking about your problems and how to solve them.

So why are we so focused on restricting care the way Internet providers are working out plans to throttle use of bandwidth? Why are we screeching about the right to see your own doctor, when he's probably due to retire anyway? Why do we assume you couldn't see the right doctor for your needs if one person is president rather than another? Why do we assume that what Jesus would do would be to hand us a voucher rather than heal us? Why do we cheer when Ron Paul suggests that people should just go home and die if medical care is beyond their financial reach?

The moon race, in the end, became more than the taxpayers could bear. But that was largely because we concluded that there was no pressing need to learn to build housing in non-oxygen environment. Or to evacuate the Earth just yet. Newt Gingrich still can't get elected running on that platform.

But there are reasons to cure cancer or ameliorate the integration of people with autism into the society of typically developing people, or to alleviate pain or to help those who could not walk or ambulate to get up off their beds with the help of adaptive equipment and go to the store and buy a quart of milk. The treatment and study of disease and disability is how we learn about these things and what you do when you participate in the healthcare system is contribute to that--to interventions and treatments that may one day save the life of a person you love.

We need politicians who realize that critical investment must be made in our health infrastructure, that healthcare is part of our larger, job-creating economy, that we must, in fact, be proud of what our scientists and researchers are able to accomplish in this area, and that we need to figure out how to provide all of our citizens with access to all of these miraculous tools. If we start from the perspective of cost, assuming that our collective resources are puny (and they're not), we'll never get anywhere. If we point fingers of blame, we'll just self-destruct (sorry, Rep. Ryan, maybe you're not a literal executioner). We have to start from the perspective of investment, humanitarian investment and what this investment will yield for our country, its citizens, and even the world.

Have we become a country that looks to the future or a nation of Hobbits, content to spend our lives by our own home fires? What happened to us?

Wednesday, June 06, 2012


Some days during my writing residency, on my 20 minute walk through the woods back to the main building, after grappling all day with some of the most painful memories of my life, I felt a sense of triumph as the trees parted at the edge of a large field and I saw this:

I had survived another day--accomplished something and I know it sounds absolutely ridiculous, but some days I felt like Sam Shepard in The Right Stuff with the plane wreck of my life burning in the background as I walked toward whatever constituted civilization, my face singed and carrying what was left of my parachute--or to be more precise, the empty picnic basket in which my lunch had been delivered to me earlier.

We'd watched the movie about Chuck Yeager and the other fly-boys in the days before I left. I'd seen it long ago and I'm sure during my original viewing I'd been caught up in its rampant macho energy, but when I saw Yeager, unauthorized, take that jet down the runway just to see how high he could fly it, all I could think about was how many gazillion dollars that thing must have cost and that he was absolutely going to crash it.

Regardless, the image that stayed with me during my residency, that I'd remember when walking the dirt road through the woods to the clearing on the other side, the image was of the jet's nose rising in silence, up and up, so high the altimeter cracks and g-forces push Yeager back against the seat while he struggles to stay conscious.

The obvious analogy is with Icarus, although I'm not interested today in obvious analogies.

A moment in life will come when you push the jet as far as its mechanics will allow. The altimeter will break and the sleek beauty of the aircraft will stall at first just so quietly and then it will pitch into a flat spin, the world cycling around you faster than you can imagine--the horizon here and then gone again--and all you will hear is the sound of your own breath in your own ears.

You may wonder then if hubris drove you this far, or whether necessity compelled you. For some, there's little difference between the two. I often wonder whether my belief that Robert is a human being no less deserving of society's acceptance, first-rate medical care and an education is hubristic on my part or an ethical necessity that drives me to fly this jet I have no business and no right to pilot as high as I can take it.

Look, I know I don't have the skills to fly this plane, to make it do what it must, what it was made to do--set a benchmark.

And that seems to me the point of Yeager's unauthorized ascent: to do what must be done, to make the vehicle achieve what it was meant what it was built to do. Necessity drives him, not hubris. After all, he's out in the desert alone, away from the glam astronauts and the nation's spotlight.

I remember writing last year about the Blackbird, the plane built to fly three times the speed of sound, the plane whose turns had to be planned 200-300 miles in advance. And how that made me think of Phoebe Snow and her disabled daughter and the risks we're forced to take, the flights we buckle ourselves in for without understanding how powerful the ride will be.

That is life with Robert, flying faster than my skills allow, hoping I can make the machine accomplish what it was meant to do: fly faster than the insurance companies can head us off, out-race ungenerous predictions of Robert's future, outrun this insane political climate in which ingratiating smiling jackasses simultaneously invoke American exceptionalism and poor-mouth the possibility of a shared effort and responsibility in accomplishing what this nation needs to do for us all--to prove the point, that is, that we are an exceptional and unique people (if that is indeed, the hegemonic and ultimately obnoxious point we'd like to make). I am, frankly, worried that under either a Romney or an Obama administration we will see Medicare vouchers tossed casually to people like my son. Because asking Romney to fly this sleek beautiful craft we call the United State of America is like strapping a black lab on top of the cockpit and Obama doesn't seem to want to get into the cockpit at all right now (hey, what gives with his no-show in Wisconsin?).

So I settle myself into the cockpit and put my flight helmet on and chart my course and hope I can control the jet. In her excellent recent memoir about grief and about living, The Guardians, my friend Sarah Manguso says she believes in the possibility of unendurable suffering. I don't know that I disagree, but I desperately want that to not be true.

But I know the flat spin may really come and when it does will I have the presence of mind to react or will I simply panic? In the film we see the plane spin in silence, we see his body eject, the seat bottom rising away from the camera, and for long minutes as the plane dives toward the pale brown and green surface of the planet we don't know if Yeager will survive.

But we're Americans, the film seems to say as Yeager strides from the wreckage--finally, music--that's part of what we do: live hard, drive fast and crash a few jets worth hundreds of millions of dollars in the service of seeing what this country can do.

A seminal moment in what I'll call my youthful awakening as an American was when Neil Armstrong walked on the moon. I was in kindergarten, but from then on I knew that's what it is to be or to become an American--think big, make it happen. Do it because it was waiting to be done.

I'm sure this seeming romanticization of the military-industrial complex will distress many of my friends--but, frankly, this Yeager-esque attitude is similar to that which drove the Civil Rights movement or social justice in general or the 2008 speeches of the Obama campaign.

Yet now we've got a cry-baby Speaker of the House and a budget "visionary" by the name of Paul Ryan who lectures us like a little girl as though the vast resources of this country, our sprawling hellishly complex economy, is nothing more than a fistful of dollars drawn from Mom's bank account to apply to a grocery list with the explicit direction that we are not to buy any gum with it.

And isn't that what Yeager asks to borrow, a stick of gum, before every dangerous flight on which he embarks? A stick of Beeman's chewing gum?

So we may crash a few expensive jets in our quest for medical breakthroughs, top-flight education, care for the disabled, social justice--hell--the moon. Maybe we'll even have to steer the plane with our eyes as g-forces pin us to our seats for a while. Not lost on me is the irony that Robert's eye gaze technology was originally developed by the military for the benefit of pilots like Yeager.

All our politicians, though, are too busy showboating like lazy astronauts on display at fundraisers to actually drive out into the desert, get in the cockpit and fly the damn plane and see what we can get this still beautiful sleek engine of a country to do for all of us. Even if it takes us a few planes to get it right.

Monday, June 04, 2012

Speech after long silence

I have been away. Geographically. Psychologically. Spiritually. I've been in New Hampshire, writing. And then back in Bethesda again dealing with whatever life throws my way. Preparation to leave had me preoccupied; reacclimatization enveloped me.

But a few lines of Yeats surfaced these last weeks or more: Speech after long silence; it is right, / all other lovers being estranged or dead. 

Yeats, of course, Yeats, my first great poet love, after a bout of puppy love with e.e. cummings ran its course I fell in love with the poet my younger brother insisted on calling "yeets," William Butler in all his imperfections--the obsessive unrequited love affair with Maud Gonne, his snobbery, elitism, his insistence on rhyme, his weird affectation with the supernatural. But then again, his rich rhetoric, his fearlessness with regard to emotional timbre, his phrasing, really. They had changed their throats and had the throats of birds. His recognition that life is mystery, beauty inseparable from a lived life in all its possible ugliness and despair--I must lie down where all the ladders start / In the foul rag and bone shop of the heart or it was the dream enchanted me.

I have friends who think their lovers and partners should be perfect. The dream itself. Yet what makes love last, for me, is its imperfection, blights, contortions. This includes the mother-child relationship, obviously. To which we might apply, indeed, it was the dream itself enchanted me … players and painted stage took all my love and not those things that they were emblems of. The elusive dream of the perfect mother and the perfect child--that's how we exhaust our parenting rhetoric these days.

While I was away, I took umbrage at a Slate series on Double X that took to task Elisabeth Badinter's contention that breastfeeding enslaves the modern mother, part of her critique of modern motherhood' cult of perfection. As usual, these discussions circulate only within the waters and eddies of typical maternal expectations: are the permutations of my parenting of my typically developing child defensible, acceptable, rational, allowable? The six-part series was your typical spiral of female agony about nothing really outside the norm.

Obviously, these conversations frustrate me, and this is what I said:

Elisabeth Badinter's conflicts of interest seem to me beside the point. Formula saves lives. Period. Every time one of these discussions about modern motherhood is launched, the subtext is that this is all about parenting of "normal" children. Parents of disabled children try to get in on this discussion and we're quickly shouted down as being irrelevant. We're special cases, exceptions. I find this a load of crap, frankly. Our experiences are as relevant to modern parenting as all the weirdos on Portlandia, which is invoked, btw, as representative of aspects of American parenting culture.

If there were no infant formula, my son would be dead. I breast fed him through about 5 months of age, before his neuro-metabolic disorder presented at 13 months. I came from a family dedicated to breast-feeding. I definitely believed then in its benefits and still do. But no one, absolutely no one, should be made to feel guilty about it, even if it enriches a bunch of corporate types. My son's disabilities are so severe that he is tube-fed and I am grateful that really good varieties of formula exist--he's in good health, given the specifics of his underlying medical condition. And he owes it to formula, which can be an excellent product and a perfectly fine substitute for breast milk.

I do agree with, I think, Katie, on one point: what enslaves is cultural attitudes toward childcare and work. Mothers of children with disabilities often feel this more keenly than the rest of you with typical kids. We don't live in a fantasy land where our kids will grow up, and these are the most precious years, blah, blah, blah, where I have to stay home and be with him/her. We know this is an ongoing battle to save something of ourselves because our children are always going to need care. And there are fewer options available to us for childcare--less money and less social support. Budget cuts in Medicaid, Medicare, and state funding are in the process of destroying our lives. And you all are worried about Elisabeth Badinter's conflicts of interest.

I understand that none of you have actually told a mother like me that she's not a part of this, but I guarantee someone who responds to me will say that. If we're excluded, then who else is excluded? Is this just about moms in the upper income stratosphere? (that's another one of Katie's points). I urge you all writing these pieces to try to broaden your idea of what motherhood is.

To my great surprise, no one did actually shout me down (probably because I removed that possibility by issuing my own accusation), although one person did remind me that formula kills as well as saves. Yes, my mom also participated in the Nestle boycott during the 1970s. Then again, the woman who responded to me implicitly expressed ambivalence about which lives were worth saving--a concern I return to again and again in this blog as an illustration of the inanity of the zero sum game the typical often impose on the disabled. Too much of our modern political discourse (both real politik and theoretical politics) revolves on money and finances and choices and who's expendable and who isn't.

So, "broaden your idea of what motherhood is" lead me last week to VIDA's "Her Kind" blog, "Beyond this point there be dragons': A Conversation With Eula Biss, Suzanne Buffam, and Lisa Olstein." A truly fascinating conversation in which the speakers expend a certain energy discussing their relationship to the
"normalizing discourse of motherhood." Of course, I applaud this sort of conversation. However, there's that word "normalizing" instead of "typifying" or "normal" instead of "typical." The very presence of the word anticipates the abnormal, yet the speakers are clearly not "abnormal," they're simply resistant to the "normal." In that they choose to resist. In that they could choose to conform, which is simply not an option for me. My son is an imposition on those who choose to conform.

Eula Biss writes: "In my life before motherhood, I believed the concept of the mainstream was mostly mythical—I didn’t believe any actual lives conformed closely enough to any set of norms to really qualify as mainstream. Everyone is too young or too old or too black or too female or too queer or too fat or too weird to be “normal,” I thought. And I felt squarely outside the mainstream myself, probably because my primary identity was as a writer and I’m fairly clear on my relationship to mainstream writing—I’m not part of it. But all of this has been complicated by motherhood. I might now believe in a mainstream, or at least in the force implied by the metaphor behind the word—a strong current that carries one along in a certain direction unless one fights out of it."

Of course, my experience was something of the opposite: aware of difference as difference prior to my own experience of motherhood and of myself as part of the typical and mainstream, aspirant to it, I suppose, and, afterward aware that the mainstream, in fact, is nothing I need to resist--I am ejected from that current altogether. I could point out here, also, a disappointment that disability is not included in her list of nonconformity.

I find myself, instead, fighting for my son to be included in the mainstream, a wholly different battle that acknowledges that "typical" and "normal" or the act of resisting the normalizing discourse of motherhood may not be choices.

Which brings me to my latest irritation, which is the facade of the high school in my neighborhood:

Bethesda Chevy Chase High School was renovated within the last decade, but the architect failed to grasp the importance of universal design. What is the point of these stairs? Absolutely nothing. They exist to promulgate an unnecessary grandiosity--a metaphorical elevation to a main entrance. The old main entrance to the high school can be seen on the other side of the building, and it is at grade level. What's appalling about this architectural decision is that it serves to exclude the needs of students with disabilities at the expense of a privileged, even elitist aesthetic. The handicapped ramp is about 100 yards to the right of this photo, meaning that anyone with disabilities approaching this entrance must take an eighth of a mile detour just to enter the building.

I don't usually enter this building, and, in fact, Robert will be attending Walt Whitman High School (grade level entrance) next year, instead of the high school in his neighborhood--more on that in a moment. My daughter, however, had her middle school choral concert here last week.

When we entered the auditorium, there were only 3 places in the auditorium where a person in a wheelchair could be seated--the rest of the probably 1,000 seats could be accessed only by stairs. One of Robert's friends who is wheelchair-bound was seated by herself in one of those bays next to the ramp that led to the stage (she was in one of the choral groups that sang that evening), while the choral groups waiting to sing were seated in the upper tier. Why not with her? I complained, of course, about everything, to one of the associate principals, who listened, at least.

So this is what I mean when I say that resisting normalizing discourses is complex, more complex ideologically than some of us immersed in academia would have it be. There's an inside and an outside, and there's an outside by choice and an outside by design.

So Robert will attend Walt Whitman High School, where I ran into my friend Patty on the day last March I thought I would scope out the program. Not without trepidation. The day before, I'd taken a phone call from one of the County special education administrators who had pressed me to articulate in what direction we saw Robert moving: college-bound, vocational, or into supported care. I told her I could not answer that question because of our recent discovery that Robert might be able to use eye gaze technology to communicate.

H shunted that possibility aside. He could hold a job, she said gently, we've placed even severely disabled students in jobs: greeters and paper shredders. One girl, I was told, could reach out to press a button--and a company that contacted the school system had a need for someone to shred paper. So an attendant took this girl into that business every day where she pressed a button to shred paper and was happy, or so I was told. Dignity of work and all.

I like H. I really do. But I didn't like this conversation. That the socio-educational-governmental-industrial complex that cannot seem to guarantee my child access to a communication device, health care, unimpeded access to buildings, equal education, medical innovation, transportation, and etc., etc., etc., could in all their misguided "generosity" find a use for my son struck me as the most Dickensian situation I could imagine. Who is he supposed to be? The frigging Little Match Boy? (oops, that's Anderson, sorry, but, really, same difference)

H and I reached a polite stand-off and by mutual agreement, we ended our conversation.

So, the next day, when I saw my friend Patty in the main office at Walt Whitman High School ("I contain multitudes," that Walt), I was in a state of shock. So why are you at Whitman, Patty asked--she knows my kids are in the BCC cluster. I told Patty I was here because Whitman was supposed to have the best paper-shredding program in the school district for disabled children because apparently that's my son's future. I said it in the too-loud tone of the peasants in the Holy Grail shouting, help, help, I'm being repressed, come see the violence inherent in the system.

A parent volunteer in the office looked at me sideways and slid out the door.

Patty, naturally, was horrified.

Whitman's program is not my ideal. It is a self-contained cluster of classrooms embedded in the mass of Whitman's high-octane, high-achieving population. Most of the kids do leave the building during the day for work programs. Robert's academics will be curtailed to some degree. But--and here was the big but and the if and it was a gamble at that time, a calculated risk--I could see it would have the right resources and environment to support Robert's training on the Dynavox EyeMax system if we could convince the County to acquire it for him. It was the dream itself enchanted me.

All of my instincts wanted to send him to BCC, access be damned, so that he might continue to be included, not isolated, not sent to a dreaded special ed classroom. Outside by choice or design or both.

I was solemn meeting Ms. G, the Whitman coordinator, which seemed to set her off her stride. She had just managed to convince me that Robert's future need not involve shredding paper when a whir and a crunch and a buzz issued from behind me. It was Allison, one of Robert's friends from elementary school. She was shredding paper.

Ms. G was abjectly apologetic. But we both laughed. And, six weeks later, mirabile dictu, the County informed us Robert will have a Dynavox EyeMax system at school next fall. And Whitman is, I know, a better place to implement it.

I didn't expect it. I've been outside by design so long, this gesture from the land of normative expectations took my quite by surprise. Speech after long silence, indeed. It is right.