Special Needs and the Marin Culture of Intolerance
Now and then, something happens to make my mind run down a particular track. This week, it was spending an evening reading some of the blogs of other parents who themselves have had to deal with special needs issues.
It made me reflect on the challenges we've dealt with, and are still dealing with, with Josh, now 21.
We were told endlessly how fortunate we were to live in Marin County, Califoria, where Josh was born. Fortunate because it had better special need services and education than any other Bay Area county, and certainly better than out in the Wilderness of the Central Valley.
All I can say in retrospect is that if Marin is the best,then Heaven help all the other people in California who don't live in that county.
There were many talented and committed medical and educational specialists with whom we were fortunate to work.
There were also down-right idiots, a few of them with advanced degrees.
But worst of all was the Marin Culture. Marin is a very expensive neighborhood, a suburb of San Francisco, and largely unspoiled. Little teeney houses built in 1946 can go for millions of dollars. Multiple millions if the house has a view of the Bay or is in a top-notch high school district. People live in Marin because of its beauty, its proximity to San Francisco jobs and restaurants and other perks. And they pay a lot for this privilege.
Because they paid a lot to live in their idea of Paradise-on-Earth, they also had great expectations. One of those expectations was that their lives would now be perfect, as would the lives of their children. After all, that's why we moved here, right?
This often translates into an intolerance of imperfection on the horizen as well as demands for immediate gratification. For all of it's vaunted Liberalism, Marinites were some of the most intolerant, selfish people I had ever met. You could rename it NIMBY County, and you'd be spot on. It was the only place I have ever worked where the complaints about homeless people in public were framed in terms of their presence bringing down a homeowner's property values rather than concern for their exposure to the elements. This intolerance carried over into the special needs realm as well.
My sense, after living in Marin for a number of years, was that special needs children fell into the same category as alcoholic homeless persons --a population needing assistance but one that we'd rather not see in our Paradise. Homeless people were thus herded into out-of-sight shelters, and special needs children were herded into programs where they couldn't "contaminate" the other Perfect Offspring of Marin County.
Where this was most apparent was in social interactions. Josh had a preschool classmate who suffered from severe CP. One afternoon, her grandmother was pushing the child's wheelchair through Safeway. Her grandaughter's CP was severe and obvious, as the child could not hold her head up, and had little control over her limbs. Another compassionate Marin citizen stormed up to the grandmother, and sternly announced, "THIS is what happens when you have children at your age! What's the matter with you? WHAT were you thinking?!"
What was SHE thinking? First, why would you treat the child as if she's not there at all? Why would you condemn the putative parent when you don't know her or her circumstances? Why would you assume you have the right to any comment at all, for that matter?
We belonged to the Jewish Community Center. We took Josh there to learn to swim and to enjoy time in the pool with his best friend, Christopher.
Because Josh was subject to seizures, had extemely limited eyesight and very poor fine motor control, he changed in the locker room with me. This entailed entering a curtained area or a closet-like space, and changing, so there was a modicum of privacy. However,this also meant walking through the women's dressing room. I was accosted one day by another member while Josh stood right next to me.
"How old is your son?!" she demanded angrily. At no time did she acknowledge that a living, breathing, thinking, feeling child was right there, hearing her words.
"He's four and a half," I said, wondering what she was so overwrought about.
"He's too old to be in here. The limit is three years old!" (It wasn't--there was no official limit, I found out.)
"Well, he has some physical problems and needs to be with a parent," I tried to explain.
"Then he needs to come with his father. I don't want him in here!" she snapped.
"His father is working today. I'm the only parent who can take him," I said.
"I'm going to file a complaint," she trumpeted. "I don't want your retarded kid in here looking at me!"
Never mind that Josh is severely vision impaired and near-sighted in his one working eye. Without his glasses, I doubt he could have seen Godzilla in the locker room. So I gave her my nicest smile. "Then buy a fucking burka, you bitch. Because he's NOT leaving."
We ran into a similar display of compassion and understanding at a community dinner one night. We were there for some function I no longer recall, but Josh was with us. He was five, and because his physical problems taxed him, he worked harder to get through a day than most of his peers. He became tired, and a bit overwhelmed by all the adult babble and the strange setting, and found the dim lighting and noise a bit frightening, so he climbed into my lap. The woman across the table gave me her Evil Eye stare all night long, clearly disapproving of bringing Josh to this glorious function where he didn't measure up to all the other Perfect Offspring on display. "He's much too old to be sitting in your lap," she hissed at me as we left.
Unfortunately, this carried over into grade school. Josh's school had a rule that no one could be excluded from birthday parties -- if one child was invited, everyone had to be invited. With the brave exceptions of a couple of parents in his class, Josh was somehow excluded anyway. The excuses varied: "Oh, it was very last minute and we just called a couple of close friends," (right--all 14 other class members); or "Oh, didn't you get the invitation? Maybe I have the wrong address?" (this one got really old); or "Gee, it was a sleepover so we only invited girls," (true--the sleepover was all girls but the party itself was everyone but my son).
The educators were great. The parents sucked, with a few notable exceptions. The kids themselves, like all kids, were at first prone to teasing or mocking Josh out of sight of the adults, but in time, even that stopped as they matured. They began to understand him, and as their understanding grew, so did their tolerance for his being so different. One girl told me she now understood why Josh kept bumping her when she was on his left: at first, she thought he was being deliberately annoying, but now she understood he was blind on his left side and just didn't see her. His classmates had more compassion and sympathy for Josh than their parents did. The kids saw Josh as a kid like themselves, but one who had a lot of problems; the parents acted both uncomfortable and embarassed by this kid with a limp, with poor vision and coke-bottle glasses, with a speech impediment, with a brace on his leg. I became adept at interpreting some of the looks the parents gave each other on meeting Josh: "Omigosh! What if what he has is catching?!"
By Middle School, we were in public school. His grade school had been a great place, but it was a college prep setting, and the academic demands on Josh starting in 6th grade were only setting him up for failure. One consequence of his medical condition is that his executive function simply wasn't at the level of his peers, so organizing his binder was a challenge--organizing and prioritizing multiple assignments from multiple teachers in 6th grade with gargantuan homework assignments to boot was going to be impossible.
We moved. It put us in a different and better school district, where we arranged for an hour of resource daily, and accomodations. This school was made aware of our concerns about bullying, and since we showed up at every placement and IEP with a thick binder of notes and reports and a tape recorder, they took us very seriously.
Bullying happened, but on a smaller scale. At the same time, nice things happened also. Some jerks thought it was funny to smear buggers on Josh's locker's lock, because he couldn't see them. When his classmates found out, one of the most popular boys in class told Josh and his teacher not to worry--from that date forward, this boy accompanied Josh to his locker and checked to make sure it was clean. He also found out who the bugger-jerks were and snitched them off to the principal, every bit as offended by this harassment as Josh's parents were.
Girls in particular were very nice to Josh. He wasn't full of himself; he could be charming and funny, and he listened to them, unlike some of the testosterone-fueled egos on campus. I don't know if they knew he was painfully shy. One day I saw him watching a group of girls talking together. "Why don't you go over and say hello? You can't talk to them standing here." He just muttered something while turning bright red.
We checked out the high school program for Josh and decided instead to opt for an alternative charter school which was excellent. After checking out the local high school in our district, we found that special needs students might as well be on the moon. There was no apparent interaction between students in special ed or resource and the mainstream students. (OTOH, given that two daughters had already attended this high school and we were singularly unimpressed with either the quality of the students or the teachers, this perhaps wasn't such a bad thing.) In short, the special needs population was warehoused.
This led to the charter school, which gave Josh two resource periods and a staff of caring, motivated teachers. Even there, it was becoming a struggle socially, but Josh was learning to stand up for himself. However, no one really was a close friend; no one really wanted to be friends. The social attitudes of the Marin Culture were by now entrenched in the Marin teens--why be friends with a "loser" who clearly wasn't going to MIT or Stanford. (The fact that half of Marin's teens go to junior college, and very few to MIT or Stanford is irrelevant--it's all about appearance.)
To this day, I have a special place in my heart for Josh's best friend, Christopher. Chris and Josh ended up at different schools but stayed friends. Chris is an exceptionally smart guy and ended up studying science at U.C. Davis. Even though he was a football star, busy with practices, homework and the near-incestuous social scene of Redwood High School, he never abandoned Josh or dropped his friendship. Now 10,000 miles apart, they're still in touch on Facebook, and we follow Chris's progress as proudly as if he were Josh's brother instead of his friend. Chris is the outstanding exception to the Marin Culture Rule--a boy whose values placed friendship and compassion and understanding above being seen as "cool" and who was never embarassed to have a friend with glasses, a stutter and a brace on his leg. Bless you, Christopher! And the parents who raised you to be mensch!