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.


3 comments:

Elizabeth said...

Oh, boy. I'm so glad you're back and you've come back with an enormous bang! That last bit that began with "I like H. I really do" and onward -- well, I was nodding my head and then I even guffawed. I find it fantastic how often those of us in this "world" use analogies to Monty Python, and the way you wrote about the parent volunteer in the office sliding out the door -- well -- another guffaw and fantastic!

I'm glad you're back Jeneva -- and I can't wait to read about Robert's progress and potential with the communication device.

erika said...

Brilliant!

A said...

I'm curious about whether Robert tried both the Tobii and the Dynavox systems, and if so, what qualities of the Dynavox worked better for him?