How Someone Ends Up In Disability Studies

… or at least thinking about it.

Those of you who know me and my family know that our son, Jules, was born with a very rare genetic disability (known as 9p deletion syndrome). He’s fine, at least medically, though it was no fun for the first three weeks of his life and has on various occasions been a little less fun than it otherwise might have been (cleft palate surgery, some ongoing concerns, now faded, about his heart). Cognitively, we know less about the future than we might, partly because the syndrome is so rare (maybe 150 cases in the United States), partly because it produces such a wide range of outcomes, and partly because the treatment of the disabled has changed so radically in the United States in the last 60 years that evidence gathered on the basis of a 30-, 40-, or 50-year-old 9p deletion person does you little to no good, since that person lived through a radically different set of approaches to disability than will any child born ten or twenty or thirty years later.

I know less than I should about how disabled people are treated in the United States. More than I used to know, of course, before Jules was born, before he spent 2.5 of his first 3 years in an amazing day care facility, in which he was fully integrated with the other kids (a process known as “mainstreaming,” now the normal thing to do in the United States), and to which state-provided therapists (occupational, physical, speech, developmental) showed up for 7 hours a week to help Jules catch up with his peers.

The idea behind mainstreaming and the therapy (which is known generally as “early intervention”) is simple and twofold: first, that the earlier you can work with disabled (or even potentially disabled) children, the better you can help them reach their maximum genetic potential (I know that’s a fuzzy concept, but let’s use it loosely here to express something like the maximal cognitive capacity someone can reach, all other things being equal); and, second, that surrounding (potentially) disabled children with other children who are developmentally “ahead” of them actually encourages the (potentially) disabled children to rise to the level of their peers. In this mainstreaming takes advantage of two well-established developmental facts: that early and frequent intervention produces better developmental outcomes, and that peer effects are powerful social, physical, and cognitive motivators (for good and ill–just ask someone who chooses to live in a frat house).

So by the summer of 2013 Jules barely qualified to continue in the state-provided program that provided the 7 hours of extra attention per week that he had been getting since he was four months old. He had made amazing progress, and was catching up to his peers on a number of levels that the state measures to determine eligiblity for its programs (gross motor, fine motor, speech, social/psychological maturity, etc.). But we were thrilled that he was qualified because we knew that the more help he got, the better off he’d be in the long run. (None of this stuff means he’ll stay caught up with his peers, which is why this early intervention is so important.)

And then we decided to move to Germany for the academic year.

So on the face of things the law in Germany and the EU more general is very good about disabled folks. But the reality on the ground is a bit more complicated.

The first problem has to do with the fact that, because I would be on a Fulbright, I wouldn’t be paying taxes in Germany. Not paying taxes (and not being a permanent resident, etc.) means that I would be ineligible for state-sponsored health insurance, which meant in turn that Jules would have no access to the various forms of early intervention that apply in Germany. Furthermore, since his deletion was considered a pre-existing condition, early intervention wouldn’t be covered either the insurance provided to me by Fulbright, or by my US, Penn-State-based health insurance company (in the latter case this seems reasonable since they are relying on the state to handle this). What help there is for non-tax-paying EU citizens (for yes, I am an EU citizen) in the state of Baden-Württemberg, it is pegged to income, and our income would not make us eligible for the 400 Euros a month that are apparently on offer.

But none of this gets to the core of the real problem, which is that in Germany the mainstreaming movement is about 20 years behind where it was in the United States. And this became clear only when we enrolled Jules in the “international” kindergarten belonging to Heidelberg’s Deutsch-Amerkanisches Institut.

To be fair: I did not disclose Jules’s disability when I applied for him (and his sister) to enroll in the school. I had planned to discuss it with the school principal when I got here and she could see Jules; I was worried otherwise that the word “disability” would scare the school away from admitting him. (This would have been illegal, of course, but… who wants to get involved in a lawsuit in a foreign country where you don’t speak the language that well, and are only planning on being there for a year?) My sister told me she thought this was dishonest. I’m not sure.

In any case Jules would be enrolled for three weeks in the DAI’s summer camp before school started; I figured that would give the school plenty of time to figure things out, and for us to meet. But as it turned out the counselors at the summer camp were college kids, who were great with Jules, and in fact never reported having anything wrong. They accommodated him by bringing our stroller along on long walks, since his low muscle tone has made him a late and easily tireable walker. But otherwise all was fine. I ran into the principal on the street and she promised she’d email me to get together the following week so I figured I’d tell her then. Also, her son was a camp counselor and I imagined he’d be reporting on both kids.

I never met the principal, because she put out her back. I finally wrote her about three or four days before school started to tell her about Jules, and saying that if it turned out the school needed any support from the city of Heidelberg I’d be happy to help. She never responded (later she said she wasn’t really comfortable writing emails in English).

Then the first day of school came. About two hours into the day, we got a call: Jules had diarrhea. Could we come get him? So we did. Per school rules we were to keep him home the next day as well to allow things to clear. But when we showed up to school the next day things were weird: the two teachers in charge of Jules’s classroom spoke to us about the fact that they though Jules might need extra help. Both my wife and I felt like they were in some weird way blaming us for his diarrhea, accusing us of somehow being dishonest with them about it. Two days later the principal talked to me after school and asked about the disability; she said the teachers were concerned that they couldn’t adequately care for Jules; they thought they needed some extra assistance in the classroom. I said we would be happy to do anything we could to help make that possible; she said she would contact the city.

I don’t really know who to talk to, she said. I haven’t had to call them in 30 years that I’ve been teaching.

That’s probably when we should have realized that things weren’t going to go well.

But at the time we figured that at some level the teachers’ discomfort came mainly from the fact that he’d had diarrhea on that first day. And so they thought that his disability was that he would have diarrhea constantly. (Thankfully, it’s not.) So we were a bit dismissive of their concerns–thinking that they’d overreacted, that once they got to know him things would be fine. And we were right, to a point.

The ensuing days went much better, partly as the teachers adjusted to the fact that Jules pooped like everyone else. (He’s not potty trained, but neither were at least two other 3-year-olds in his class.) Nonetheless they kept expressing discomfort and concern, usually framed in terms of being worried about their ability to give him the attention they were saying he needed. This involved suggesting on occasion that we might want to start picking him up at 3pm instead of 5pm; that they were very concerned that when the number of students in the class increased (from 6 to 12, as it has) they would not be able to include Jules; that not being able to keep up with his peers would damage Jules psychologically.

All these are perhaps legitimate concerns, but, coming from a situation in which not a single one of them had ever been raised–where in fact the teachers and the administration of our daycare in the US had assured us up front that they would be able to meet Jules’s needs, and then had not only done that but had shown us how to be better parents, and had worked directly with specialists in order to become better caregivers for Jules–they hit us like a ton of bricks. We experienced them as expressions of unfamiliarity and hostility towards our son, and, more broadly, felt like the real problem was that Jules was different enough from the other children that he was somehow violating the normal expected range of abilities and behaviors with which the teachers felt they could cope.

Around this time I began talking about these issues with my mother, who has taught and been the head of a number of schools in the US and abroad for the past 35 years. She told me that when I was three and four, she had similar problems with the teachers at the French daycare I attended. I wasn’t disabled; just rambunctious, and probably (if later life is any guide) fairly obnoxious. But more to the point, my mother said, I wasn’t quite French enough–I wasn’t socialized to the more normative expectations for the behavior of French children. This felt like an awfully familiar story; what my mother and I encountered, some forty years apart, was the awkward integration of a child marked by difference (and Jules is American, too) into a culture that tends more strongly to value social and behavioral similarity. Jules’s differences weren’t just inconvenient; they were, in some sense, anti-social.

That is why, I suppose, until recently most disabled children in Germany were put into Sonderschule, special schools; in fact many of them still are, and our principal suggested that we might consider this as an option while realizing, I think, that there was no way in hell we would do so. It explains also, perhaps, why a friend of mine, hearing my story, remembered a proposal in Austria to put all non-German speaking kids in special classrooms… at which point, being surrounded by other German speakers, they what? Wouldn’t learn German, I guess. Then you could complain that the immigrants were failing to integrate themselves into society.

You can get pretty quickly from this kind of rough analysis of cultural difference–based, I want to point out, on one example, about which I’ll have more to say in a bit–to an easy iteration of Godwin’s law. I confess that at one especially angry moment I did contemplate mentioning to the principal the resemblance between Sonderschule and the camps. At some level it’s more complicated than that. At another–especially given three decades of research showing that special institutions seriously damage liftetime outcomes (cognitive and physical) for disabled people in them, it isn’t. Putting people in Sonderschule is in many cases the equivalent of throwing them into a social garbage can. That later in life such folks are heavily supported with state funds doesn’t improve the situation.

But back to Jules. A couple weeks later, on the occasion of the first Parent-Teacher night, I met again with the principal. We really need to do something about Jules, she said. We would like to have someone there for him at least 2-3 hours a day (this later went down to 3 days a week). Have you called the city office? Yes, she said. They offer a maximum of 400 Euros a month in support, means-tested. But a trained instructor costs 58 Euros an hour. So even if we had been eligible for support, we were looking at a cost of some 2000 Euros a month to put Jules into a situation in which the school would feel comfortable. No wonder that, faced with this kind of situation, even mildly disabled kids end up in Sonderschule. (Two weeks later, after we’d already decided to withdraw Jules from the school and had discovered alternative arrangements, I found out from Jules’s speech therapist that a German-language kindergarten about 20 minutes from here does in fact integrate disabled children into its classes. So there may be alternatives; you just have to be here long enough to find them. Given the Fulbright situation and my language abilities, that was not possible this time around.)

The way we left it with the principal was that she would call the city office again and see what she could do. We all expressed goodwill and enthusiasm and went home. But I felt like the message was awfully clear: the school was trying to get us to take Jules out. They couldn’t say so, since it would be illegal to do so. But we were being told that they couldn’t care for him.

That same day I had run into one of Jules’s teachers. He did really well today, she told me. All the kids were in a circle singing a song and he actually came in and joined everyone! She seemed really happy. I felt good for about 5 minutes, and then I realized that this story meant that all the other times the kids had sung together Jules had somehow not been included in the circle. What the hell was he doing then?

It’s hard to regain trust in teachers, or a school, when you’ve lost it. Short of putting a camera in the classroom I had no way of knowing what was happening to Jules on an average day. And my wife and I no longer felt like we trusted these folks. We knew they were inexperienced in dealing with disabled kids (though again, Jules is not very disabled by US standards). But it’s one thing to be ignorant–you can fix that. It’s another to take your ignorance and inexperience and turn it into a series of rationalizations that justify it. It was clear that the school felt that this was Jules’s problem (or ours), not theirs. That is, that this was a result of his disability (and the dishonest way in which we’d concealed it) rather than of their lack of imagination as teachers. None of our American teachers have had this problem, which is among other things quite obviously a matter of training and experience. But the DAI teachers and principal did not seem willing to acquire it. At this point they’ll go another year with no disabled kids in their school, and if they keep it up, they’ll never have to have any there. That’s one way to keep from having to deal with things.

Cut to last Monday. We’ve come up with an alternative plan for Jules, which involves having one of the camp counselors from this summer, who we loved, care for him through lunch, after which my wife (who isn’t working this year) would mostly take over. Among other things this would mean that Jules would never be playing by himself while his peers did some kind of activity. But Jules is still in school, because we’ve decided to give things another few days, and the principal has still not managed to call the city office.

At 10:30 am we get a call. Jules has thrown up. Can we come get him?

When my wife picks him up, the teacher makes sure to mention to her that he won’t be allowed to come back on Tuesday, because of the 24-hour rule. When we meet at home a few hours later the decision is easy enough to make. (Jules by the way does not throw up again, and seems totally fine, all day Monday and Tuesday.) It feels to us now like the teachers are looking for reasons to get him out of their hair; it’s the equivalent, we think, of a work slowdown. (In the US, a kid throwing up does not equal an instant trip home. This is probably a cultural difference but in context it was hard to read it that way). So we go to the principal and tell her we’re pulling him out.

The lowlights of that conversation are two: the first in which she says, “I’ll agree to this, but you have to agree that you’re not angry or upset with the school,” to which we spinelessly nod. And the second in which she says, “I wish we could have done more, but you know, this is a school with an ‘academic’ focus…” and drifts off, leaving us to understand that Jules and “academic focus” are an incompatible pair.

Jules seems ok with the new arrangement, so that’s something. And he’s learned some words in German from his classmates, which is pretty cute (mainly Nein, Nee, and Ich auch). But we are really really angry. This anger is, as you might expect, attaching itself most immediately to the teachers and the principal, who now when they see me seem (but perhaps I’m projecting?) to be extra friendly in order to ask me to forgive them for something they think they did. I’m sure that they sometimes feel annoyed that they feel guilty, and make things better for themselves by blaming us for foisting this kid on them. (I imagine that because it’s what I’ve done; it’s what we all do). And of course there’s no real point in being angry at them, since they’re products of a system that has let them teach for however long without having to deal with disabled kids–or, given the entire system–with any difficult differences at all. Teaching is a pretty easy job, in my experience, when you only have to teach the kids who behave in the ways that are convenient for you.

Anyway. It’s been a week, and I’m less mad now that I was, which is why I’m writing this. But I have thought that this is how academics who don’t start out in disability studies, like my friends Janet and Michael, end up there. Because if you’re white, privileged, heterosexual, and a citizen of the country you live in, very little confronts you with the power of the state or of culture these days. Or rather, very little confronts you personally; you get confronted all the time with images and news of violence done to others at home and abroad (the poor, the unemployed, the accidental but entirely predictable victims of “collateral damage”), but little of it happens right in your home. And that’s how you end up, I’m guessing, feeling like you have to something to say about disability.

The point has to be this: citizens must have rights as citizens in relation to their actual being and not to an ideal. This means that children must have rights as they are–that their rights cannot and should not be contingent on their behaving exactly like adults. (You may have heard someone once say, “I’m ok with children in restaurants, as long as they behave themselves.” No, you’re not ok with children in restaurants. You’re ok with adults in restaurants, no matter what age they are.) The same goes for disabled people. It cannot be that only the able-bodied have the right to be in school, lest the disabilities of some “disrupt” the educational experience of others–or make the lives of teachers harder. You have to teach the kids as they are. If, instead, you send away all the difficult ones, the slow ones, the problem cases, the kids whose parents didn’t, or couldn’t, fight for them or make them do their homework–just as the German school system did for years, splitting children up at age 10 (age 10!!) into three tracks leading respectively to blue-collar jobs, low-level white-collar jobs, and the university)–then what you are producing is a “citizenry” that has been purged of its various undesirable elements, and therefore denying the rights of full participation in society to anyone so excluded. That is true even when you place those folks in whatever variety of “special” schools you can imagine, from institutions for the disabled to juvenile detention centers to the Hauptschule, which occupy the lowest rung of the class and educational ladder and send their graduates to vocational schools.

That this makes teaching harder, or running schools harder is, to my mind, tough shit. You either have an inclusive society or you don’t. And if you don’t, or don’t want to, I suppose it’d be nicer if you could at least be honest about it, to yourselves and others, instead of asking the folks disadvantaged by that system to pretend it’s all ok.

Nothing’s new about that pretense. It’s the face of all pretense, all violence that wraps itself in sweet justification. Otherwise how could the perpetrators of such a system live with themselves? No one thinks they’re ignorant, or venal, or evil. Nonetheless some of us are; all of us, probably, at one point or another–certainly structurally if nothing else.

That’s one lesson to be learned here: not only that some teachers and principals in Germany have convinced themselves that they’re doing good while doing bad, but that we all do it; in that sense this scene is not a window but a mirror. But the other lesson is that not everyone’s doing bad in the same way, and that, when we see it, we have to call it out for what it is, say what it is, and try to talk to others about it. Not because it righteousness feels good (though, of course, honestly, it does) but because we need better teachers, and better parents–ones who fight for kids, who take what kids give them, and who teach the students in their class–all the students–how to live and act in a social sphere that includes, minimally, all the human beings who have come to be there, through no fault of their own.

Source: Printculture


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