A few weeks later, Ms. Brownnoser and I pulled up to school at the same time. While we waited for our kids to get out, she leaned her head in our car. In a loud voice usually reserved for hard of hearing kittens, she said, “Hi Thorin! Are you unbuckling yourself? Can you unbuckle your seat belt?” Then she clapped her hands together enthusiastically—twice. I wanted to key her car or put sugar in her gas tank. She couldn’t hear how demeaning she sounded and, in fact, thought she was being nice to a “Down syndrome boy.”
There was another mother whose daughter was in Thorin’s class. She constantly talked about how much her daughter liked Thorin. I wondered if she really wanted me to thank her for raising such an open-minded daughter, or maybe she was angling for a college reference down the road.
One afternoon, I was waiting for Thorin after school. She came over to me.
“Last night Jordan told us again how much she likes Thorin.”
“Wow. Maybe they’ll get married,” I said.
“What? Oh, you’re funny!”
“I am funny.”
I stayed silent after that. I honestly couldn’t think of anything to say to her, but she did.
“I understand why Thorin pushes other kids; it’s because of his communication issues.”
I felt tears sting my eyes. I nodded my head and continued looking forward. She finally walked away. She must have also known he loved the Avengers. Almost everything he wore was Avenger branded, but she didn’t ever say anything, such as “I guess Thorin is a real fan of the Hulk.”
I knew nothing about this woman’s life that might come under the heading of personal information. Had I, I certainly wouldn’t have mentioned it.
A few days later, Ward was watching the news.
“Hey get out here and see this! They keep repeating it.”
We stood side-by-side in the den, watching what was being touted as an inspirational story. A teenager with Down syndrome, who was the ball boy for his school’s basketball team, was allowed to play as the game was winding down. A member from the opposing team threw him the ball during the game. That was the whole story.
“What do you think?” Ward asked.
“Well, he knows the kid shouldn’t have thrown the ball to him.”
“Yes! And what’s up with letting him play? Like they did him a favor.”
“They feel sorry for him. Why’s that news?”
“Pity is trending today, I guess.”
We both noticed a couple Facebook friends of ours had posted the story on their newsfeed. I wondered if pity would be good enough for their children rather than the genuine experience of being included as an equal. I reached out to those friends on Facebook, explaining how Ward and I saw the story. Both exchanges were terrific—they understood what our concerns were for Thorin and deleted the post. I also wondered if I would have found the story inspirational if Thorin wasn’t our son.
To help process my thoughts, I wrote about it on the blog. I suggested to my readers that these types of stories seemed to suggest that when those of us without Down syndrome demonstrate some little speck of contrived humanity to people with Down syndrome, we deserve to be applauded for our efforts. I wanted so much more for Thorin. In the grand scheme of what we have to offer each other as human beings, these acts were crumbs.
Given work commitments, Ward had stopped writing on the blog in 2010 while I had continued. I still wrote storytelling posts about our family. I also wrote about my political awakening through not only Thorin’s stories but also the stories of others.
One story in particular sickened me and hit hard at my greatest fears for Thorin—being victimized. On January 12, 2013, a young man named Ethan Saylor had been killed by three off-duty sheriff’s deputies moonlighting as security guards at a movie theater in Maryland. Ethan had Down syndrome. He refused to leave the theater when the film he saw ended; he wanted to watch it again. The three men brought him violently to the ground, then they restrained him by his wrists and ankles with a third set of handcuffs used to connect the other sets. They laid him on his stomach, and he died of asphyxiation. The position in which he was detained was not allowed by law enforcement because of the probability of death.
My heart pounded, and I felt anxious as I hit publish on my first post about Ethan. I was Thorin’s mother writing about another mother’s son. In that post, I saw Ethan’s death as a human rights violation. I questioned whether they would have responded likewise to someone without Down syndrome. Clearly, there had to have been an alternative to killing someone over the price of a movie ticket. The press coverage I read seemed to blame Ethan’s Down syndrome for his death rather than a homicidal overreaction by the three individuals who killed him. Another author suggested that people with Down syndrome are predisposed to being stubborn. He contended Ethan might have contributed to his own death by responding in that stereotypically Down syndrome manner. I found that reasoning to be repugnant and victim blaming.
Ward and I had both heard that children with Down syndrome were stubborn. We heard that from professionals and regular folk, including parents who had children with Down syndrome. Even Lo-Lo had asked me once.
“I’ve been reading about Down syndrome because of Thorin. Do you think he’s stubborn?”
“I think I’m stubborn.”
She laughed. “I don’t believe it either.”
“I think Thorin processes information slower than I do, so his reaction time is slower than mine but close to the same rate as Ward. I know I look like a whirling blender to them.”
All together, I wrote three posts on Ethan in March of that year. In each, I challenged the mainstream’s take on his death and also the position of some of the national Down syndrome organizations. It was being written
