Wednesday, January 26, 2011


Like most people in the WDC area, tonight, I watched the State of the Union address (hey, it's a company town--and what else is there to do on a Tuesday night?). I've not much to say about the policies proposed--this was a middle-of-the-road, play to the center kind of drama this evening, and, as such, had little in the way of fireworks. Education had a prominent role, as a Facebook friend noted. Higher standards and all that. Race to the Top. Achieving higher graduation rates and using community colleges to get there.

That snagged my wavering attention like a shirt on a hanging bow as my mind wandered downstream. And at the end of the speech, the following hung me up by my collar:

We may have differences in policy, but we all believe in the rights enshrined in our Constitution. We may have different opinions, but we believe in the same promise that says this is a place where you can make it if you try. We may have different backgrounds, but we believe in the same dream that says this is a country where anything's possible. No matter who you are. No matter where you come from.
That dream is why I can stand here before you tonight. That dream is why a working class kid from Scranton can stand behind me. That dream is why someone who began by sweeping the floors of his father's Cincinnati bar can preside as Speaker of the House in the greatest nation on Earth.

Yes, this made me slump less to the right on the couch, and even prop up my head with my hand. Ordinarily, these sorts of John Phillip Souza lyrics make my heart beat a little faster. I'm a sucker for the Fourth of July flag-waving kinds of self-reliance talk, the rise of the individual and all that. Obviously, I am weak. I know this. Do not remind me. Most of my life I've believed in the virtue of hard work, and it's what keeps me going with writing (which is largely a young person's game), wedging it into this small slot here, that tiny tabletop there, wearing myself out some weeks making only baby steps toward various goals--poems, essays, a book. Because I just figure that baby steps will add up to something. If I just work hard enough. I might as well be John Boehner sweeping the floor of a Cincinnati bar.

Which is all to say, yeah, yeah, yeah, I get it. But the problem is I can see the promise of those words for just about everyone except the disabled. (No, I'll not be whining about writing this evening.) Are those words true for any of the disabled children I've known or met or seen occasionally in public with their families? "You can make it if you try." "This is a country where anything's possible. No matter who you are."

I've written this year responses to comment streams in the New York Times in which most of my fellow citizens felt it a waste of taxpayer dollars to even let disabled kids 'try,' let alone 'make it.' This is not a country where anything's possible if you are excluded from educational opportunity because no one can figure out how to tap into your intelligence or develop a method of communication that allows you egress from a body that traps you. And, by the way, where those same people blame you for not being able to work with the systems that are in place, no matter how inadequate.

Standards are certainly high here in Bethesda. Looking over my daughter's middle school course selection guide, a guide with a photo of the bland, brick facade of Westland Middle School on it, a guide I never glanced at when dealing with Robert's course 'choices', which would largely be dictated to me anyway, I was conflicted by the opportunities offered my daughter, which were simply unavailable to my son. I struggle with the way my children are forced into a capitalist framework, in which they have differential 'value.'

I struggle with my own complaints. We dealt with exceptional bias in elementary school, especially in the early years: the physical therapist who decided she was also qualified as a neurologist. The speech therapist who had trouble learning how to use an email system and who was put in charge of helping my son use a highly sophisticated computer that allowed him to access it with his eyes. The special ed official from the county who kept repeating 'low tech,' 'low tech,' like a myna bird during a series of contentious IEP meetings, and who insisted that a white board and some colored markers were good enough for my son. The first grade teacher who told me that Robert's ability to raise one hand for yes and one for no might be all the communicative ability he needed in life.

Yes. The first grade teacher who also became my daughter's first grade teacher, and dribbled her secret contempt for my son onto my daughter and decided her shyness in first grade was an indicator of lesser intelligence. Because my son was obviously not an intelligent person. We were locking horns with the myna bird above while my daughter's education advances were slowed, and didn't discover what had been done until second grade. When I walked into a parent-teacher conference to discover my daughter was being told baby books were her speed. Believe me, that changed.  Quickly.

Robert's unknown illness was, to them, just another kid with MR whose parents didn't want to admit that. That fact that all these teachers had seen 'so many times' before--'in their experience.' And if Robert was congenitally intellectually defective, than the rest of us must be as well.

As a result, I am unable to trust any of my daughter's teachers. I look over her graded papers, particularly the reading and literature papers with an eagle eye. I write to them about points and grades I deem unfair. And I don't back down.

I struggle with my own complaints. What could I have expected? My son had an unknown illness. I did what I could to advocate for him, to press his strong suits, to get others to reconsider their own 'certainties' in the light of the pervasive uncertainty in which I am forced to live. What indeed? My kid is locked in his own body, with a muscular variability and decline that do not establish the fixed access points around which augmentative tech is built. The repetitive trials to 'prove' he could master the single communication device that would be allowed in the classroom. When he was 'ready'.  When he had worked on it alone in a room with an adult (because childhood communication has nothing to do with peer support, right?) for a long enough and perfect enough period of time to satisfy that adult.

Robert was not well served in elementary school, although his last two years there were OK. The combination of his unknown illness, basic bias toward non-verbal children (especially those with severe motor impairments), and augmentative tech that is still limited in scope, all of this was toxic. We've been called to an IEP meeting at Westland Middle School on February 10 because Robert is not passing any of his classes.

This does not surprise me. How far can you go in life by being able to answer only yes or no questions? Math problems, for example, must be broken down into micro components. Answers to analytical questions lack substance. There is no way for my son to meet the County's vaunted, hyped-up 'standards'. And the County is as complicit as any other entity in this problem.

Don't look at me. I have no solutions. My wish is that he remain in a regular classroom, absorbing what he can. Because the development of the mind, regardless of the limitations of the inputs, the outputs, and the gray matter that's there, is what he has to gain from life right now. As well as interacting with a spectrum of his typically and not-so-typically developing peers.

The alternative is, well, for lack of a better word, dumb. FLS, or functional life skills. This program is a relic of the way the County used to do business in special ed: kids with clear academic potential in kindergarten went to the learning centers, children with clear MR went to FLS, and children with severe muscular disabilities (which could only mean their cognitive abilities were equivalent, according to the 19th century neurology standards used by the school system) went to a horrifying, isolating institution-cum-school called Stephen Knolls. A place I was asked to visit. I walked in the front door, heard and saw what I could from the lobby, and walked out, vowing that my son would go there over my dead body.

FLS is a program in which the focus is on these three things, as far as I can see: counting change, learning to ride the bus, and learning to wash your face. Year after endless year. None of which Robert can accomplish physically. I've been told he could work on communication--but that would be in isolation. FLS is for kids with reasonably good motor skills who have cognitive impairments. It's a vestige of what the County used to be before Inclusion. It does not accommodate a child as complex as Robert. He's best served individually in a regular school.

Robert is not passing his classes because they switched the grading standard. We noticed this around the same time we were focused on the Cleveland Clinic visit and the prospect of diagnosis. We asked why the switch, and we were told that they wanted to get more realistic grades, or something like that--I worried about this at the time, but, frankly, I had bigger things to worry about. So this leads me to believe that we are going to get the big heave-ho at this meeting. All I can say, dear reader, is I will stand up to these bullies, even though I am quite tired of standing.

If that happens, I tell you, I don't know how I'm going to be able to deal with the disconnect between my son and my daughter at this same middle school. How they can support one child, but not the other. How I'll be able to trust any of my daughter's teachers. How I can stomach this crap about achievement without losing my lunch. And my own guilt at how complicit I was with all of this garbage all the way through my own education--top of the class and all of that.

The sad thing is that I really believe all that bunk from the President's speech: "We may have different backgrounds, but we believe in the same dream that says this is a country where anything's possible. No matter who you are. No matter where you come from." But I guess it depends who the "who" is.

What I'd like to be able to do at this IEP meeting is to stand up and say, "That dream is why Robert can stand here before you tonight." Or this afternoon.


Elizabeth said...

This has made me cry tonight. In solidarity and sympathy and empathy and I don't know what -- perhaps, despair.

GB's Mom said...

Like most things, the President's speech offered hope for all, except for those it doesn't.

Sara said...

Oh Jeneva--so much of this i can remember from my own childhood as my parents dealt with having one deaf child amongst three "normal" ones, and yet, of course, this goes beyond. My own students have been reading Freire, Dewey, amongst others, and discovering the dark side of a capitalist model for education--that their worth is in their productive, bottom-line value, and that what they are taught is determined by what they appear to be 'worth' to the outside world. One young woman wondered today in class what happened to Freire's idea of human's ontological determination to 'be more human' (to poorly paraphrase) and how quickly we narrow down who's allowed to be human, who we delegate to 'other' and therefore less human status. I ramble, but know there are others out there, some of my students, me, who deeply believe in how utterly worthwhile , valuable, HUMAN, Robert and those like him are. "What are we afraid of," my student asked her classmates, "if we treat everyone like they're worth the same as us? Are we afraid we will then be worth less than we are?" Yet so much of the cresting wave of the educational tide seems to suggest otherwise. Seems to be pointing us toward the bottom line rather than the human line, where after all, we all stand, all deeply flawed, all as human as the rest.

To hope, because without that, what is there? Thinking of you in Michigan.

Autism Mom Rising said...

My best wishes to you at this meeting. You will fight for your son, as you always have, as you always will.