Ward and I also decided another IEP meeting was in order. There were so many moving parts; it was hard to know what was happening. I approached Mrs. Dean and Joan Croft about an IEP meeting to discuss the implementation of a much-needed communication device, the behavioral concerns, and educational goals. The meeting was set for a month away. In the meantime, Joan Croft suggested we move to our assigned neighborhood school, old Walt Whitman High, where they wanted to place Thorin in a self-contained classroom. Mrs. Dean suggested we homeschool Thorin. It was that moment when you know you and your kid were no longer welcomed.
I even got into an argument with my mom about Thorin’s schooling. She thought what we were doing was unfair to Thorin and suggested we try the self-contained classroom. I tried explaining.
“There’s no guarantee he will learn there either.”
“Well what about David? He doesn’t have problems.”
David was the only other child at the school who had Down syndrome and had been at Thorin’s preschool. My mom wasn’t the only person to draw comparisons between Thorin and David. David was a year older and several inches taller than Thorin. He had dark hair, dark eyes, glasses, and his verbal communication skills were superior to Thorin’s. When someone wasn’t mistaking them for each other—which seemed very “they all look alike” to me—then they were comparing Thorin to David.
“They’re two different people. Besides, David is in an inclusive classroom.”
“Maybe Thorin shouldn’t be.”
“Well it’s what we’re doing.”
I realized the difficulties at school were a reflection of what people in general think about a child with Down syndrome: They are not like the rest of us. Worse, they are less than us. And, I wasn’t just thinking about it; I was writing about it on the blog. The blog became my connection to other families who were struggling. I found it isolating to figure out what was best for Thorin. Sharing what was happening on my blog made it less lonely.
I had made a discovery! Albeit, it was a year before. One of my favorite authors, Chuck Klosterman, made fun of people with cognitive challenges. I had googled him out of curiosity when his appointment as the Ethicist at the New York Times was announced in 2012. While I was searching, I came upon a quote by Klosterman that floored me: “You used to be able to tell the difference between hipsters and homeless people. Now, it’s between hipsters and retards. I mean, either that guy in the corner in orange safety pants holding a protest sign and wearing a top hat is mentally disabled or he is the coolest fucking guy you will ever know.” I could not believe the writer I loved said that. Then, I discovered he had, at a book reading. Next, I searched “Chuck Klosterman and retarded” and found more examples. In his book Fargo Rock City, he wrote that he didn’t want to sound insensitive yet continued to say “. . . show me a person whose intelligence equates to that of a dolphin and I will show you a fucking retard.”
My next step was to search online for some instance where he had been chastised or called out for that usage. I couldn’t find anything. How had a person who was deemed the Ethicist by the New York Times not been challenged on that ethical point? I felt like Melanie Griffith in the film Working Girl! In the same way Griffith had put together seemingly unrelated facts culled from newspapers and magazines to suggest a brilliant business acquisition, I had figured out that the New York Times’ Ethicist wasn’t completely ethical. I had to do something! But, I didn’t do anything for over a year. I had no idea how to go about addressing him.
I didn’t tell anyone my discovery. Then, three things collided: I was gaining readers and a little reputation for what I was writing; Chuck Klosterman had recently published a new book I Wear the Black Hat; and I knew the problems Thorin faced at school were a reflection of systematic oppression directed at people with disabilities.
I finally told Ward what I discovered.
“Oh, no. Kari, do you really want to go down that road? We have enough going on.”
“Hell, yes! We’re losing this battle at the school because it’s a bigger battle. It’s out there! I want to change out there!”
“Settle down. What are you proposing?”
“I’m going to write him an open letter on the blog. I’ll get others to share it!” Even as I said it, I knew it sounded like “I’ll put on a show in my parents’ garage!”
“How will you get people to share it?”
“I can do it! I know I can!”
I had never considered that part of my parenting duties would include activism but I knew I had to do something. The blog had become an extension of my parenting as an advocate; confronting Klosterman was too. I wrote my letter. It was short and to the point. Ward looked at it.
“Are you worried about what will happen?”
“I’m more worried what will happen if I don’t. I’m doing it!”
For the first time in months, I felt like good things were possible for Thorin. With excitement and nervousness, I hit publish.
Was it a viral sensation? Well, I did get enough people to share my post that I was able to get Chuck Klosterman’s attention—he sent me an email apologizing and offered to make a donation of $25,000 to an organization of my choosing. Also, I had permission to print his letter on my blog. I was interviewed on our local NBC affiliate, and USA Today picked up my story. It had worked!
He and I both did something unique. I had crafted a persuasive argument I knew would be hard to resist because he was, after all, the Ethicist—he would be a pretty crappy one if he didn’t—and because he had just published a new book. No one wants bad press. As for
