11
Needed
Kai isn’t just tolerated. He’s needed.
Society grants him his dignity,
and does itself the biggest favor.
The next day, Kai is sitting in the offices of Frontiers, Kamila and Henry’s company. The sun warms the room, the pollen floats by, Lausanne shimmers. Smiling and chatting people drift in groups through the hilly streets. Kai’s mood has lightened up, too. The employees greet him like an old friend, two dogs frolic around him. He is here often and likes it.
Frontiers’ headquarters, located on a hill overlooking Lausanne, a stone’s throw from the International Olympic Committee, are spread over two floors, featuring alcove seating, a kitchen, and a large open-plan office with a view of Lake Geneva. What started with Kamila’s aggravation about not being able to download her own thesis has grown into an “open access” internet publishing platform. The idea is to share knowledge freely at no cost, for the benefit of experts and laymen. Parents of an autistic child, for example, should be able to divine the current state of research on the site. Kamila has won prizes for her work.
Frontiers publishes magazines, essays; 80,000 scientists help edit it, and 300,000 scientists contribute writing. Famous scientists publish their work on the site, while others use it as a basis for their research. No competitor—according to the well-known market researcher Clarivate Analytics—is cited in more essays about neuroscience and psychology. Frontiers is the number one source for authors and scientists. Frontiers has five hundred employees, offices in Seattle, in India, in London, and Madrid, and they are still hiring—scientists, programmers. Linoy works here too.
She isn’t in this afternoon, and Kamila is sitting in front of her computer with red cheeks, way too much to do again, so Kai is hanging around alone, a phone in his hands, a plan for the day in his head. He’s going bowling tonight. In Israel, he tells me, he goes bowling every evening at 7:00 p.m. What he doesn’t mention: he is one of the best bowlers on his team and plays in the top league in the region.
It’s easy to start a conversation with Kai. He smiles at you, looks into your eyes. He wants it to work. One can easily imagine him at his job. Kai works at the courthouse as a security guard. Experts have found that people with disabilities subconsciously affect others, making people they encounter more mild-mannered, more relaxed, more considerate. People with disabilities change the mood in a room without doing very much. This is a particularly valuable gift in a courthouse. They face upset, quarreling people—and calm them down. It’s a job that couldn’t be better suited to Kai. He isn’t just tolerated. He’s needed. Society grants him his dignity, and does itself the biggest favor.
This draws the situation elsewhere in the so-called first world—where people with disabilities are often still gawked at, stigmatized, and excluded—into sharp relief. It’s inhumane, unreasonable, and we hurt ourselves as much as we do them. They shouldn’t have to be highly gifted to get the place they deserve.
“Before I got the job in the courthouse, I sat at home bored,” Kai says. “I woke up in the morning at 8:30 a.m., ate something, and then watched television. Every day was like that. Eventually, I watched TV until the next morning, until 6:00 or 7:00 a.m., because I had nothing to do. It was bad. When I started working at the courthouse, everything changed—that made everything good again for me. Now I have more fun. We have a lot of colleagues. And they love me. They really love me. They’re happy to see me.”
The worst day he’s had so far was when he arrived twenty minutes late. Unforgivable. In the following weeks, he set his alarm clock earlier. He went to work at 5:00 a.m., leaving nothing to chance. But then he was so tired that he fell asleep at work.
How far is it to work?
Kai thinks about it. “It really depends,” he says. “I can be there in three minutes or in five. I can take the long way, or, if I’m in a rush, a shortcut.” Kai starts describing both routes, where he turns at the mall, what door that will take him to . . .
Kai doesn’t do small talk. As easy as it is for him to start a conversation, he finds it that much harder to keep it going. He mumbles, loses syllables and words to the excitement, starts twiddling his fingers, plays with his keychain. He tries so hard, but he is on foreign terrain and accordingly feels insecure. He has met too many people that lose interest in him and turn away more or less politely. This is a shame, because he has such interesting things to say:
About a woman in his neighborhood, who can tell exactly how you feel when she puts her arm around you. She calms him down a lot.
About bowling, starting with his ball, which weighs fourteen pounds and is blue, yellow, and orange. And how you need to compose yourself, follow through with your arm. Most important, you have to clear your mind, not pay attention to anyone around you. “Don’t listen to anyone. Just play for yourself.”
About his grandmother, who died when he was a child. “She showed up at my kindergarten on my birthday.” She never treated him like he was different.
About his worldview: “I feel things differently.” He can’t describe it exactly.
About his tantrums: “I was a bad boy. I hit and I spat. I was bad because I didn’t know what to do. Now, I’m an adult.”
About the boy in the neighborhood who pushed him: “I told him, ‘I forgive you, but I will never forget.’”
About the school he transferred to, where the classes were small and the other children were nice. A boy there teased him. Kai didn’t even look at me when he said, “My teacher saw it. She came over to me and said, ‘I am really proud of you.’ I liked going to that school. But I didn’t like studying.”
About his music: “It calms me down when I’m in a bad mood.”
About his secret room in the basement, where he can hide and write songs—love songs.
About his dreams. He wants to be a professional musician, a singer. Or something with drawing. He’s good at that.
About Fridays, when he cooks for his mom and Kali. Spaghetti, steaks, never fish or sweet potatoes.
About the best moments in life. When he sings Christmas songs with Olivia and Charlotte. “I start: ‘You better watch out. You better not cry. Better not pout. I’m telling you why. Santa Clause is coming to town.’ Then Charlotte sings, then Olivia, then it’s my turn again. And everyone likes it.”
About Kamila and why he liked to walk on the curb. Was he trying to annoy her? “No, I just wanted her to come and catch me.”
About his sisters, whom he loves more than anything, and whom he envies, because they have something he doesn’t. “They have a brother. Me. And I don’t have a brother. I want one so badly.”
About his parents’ separation, when he was a little boy: “I was sad, but I always knew that my mother and father are the best of friends. I have friends who say, ‘How can that be? Why do they still talk to each other? They’re divorced!’ I am proud of my parents. They’re best friends. And my mother likes Kamila.”
About his father: “I used to be a momma’s boy. Today, I need my dad more. We go hiking. He’s the perfect dad. When I pray, I thank God for giving me my dad.”
A while later, Henry joins us. They talk about hiking. Once they went moonlight hiking. Fifty miles in three days through Switzerland. In the middle of the night, at 3:00 a.m., they arrived in a small town. All the hotels were closed. They hadn’t expected that. “Let’s sleep on a lawn,” Henry said. Kai was scared. And it was raining. They went to a bar: Does anyone know of a room? Then a hotelier showed up. What luck!
“Are we going bowling today?” asks Henry. Kai nods. They talk about strikes and spares.
“Three hundred points is a perfect game. That’s impossible,” says Kai.
“What’s your record?”
“A spare, five strikes, and then—”
“Then you messed up.”
Kai laughs. “No, two more strikes at the end. Two hundred forty-five points.”
“He’s been beating me for a long time,” says Henry. “When did you start beating me?”
Kai laughs again.
“I know how to beat you,” Henry says. “I just make a lot of noise, distract you.”
Kai laughs even louder. “Oh, yes.”
“You’re too sensitive.”
It’s 5:00 p.m.: two dozen employees meet up in the kitchen. The weekend has begun. They chat, laugh, pop corks. There are chips on the table, chocolate, celery sticks, and dips. Kai lounges by the counter, next to a small speaker. Any moment now, it will connect via Bluetooth to his cell phone. He’s DJing today and plans to play Israeli pop and three of his own songs. No one pays too much attention when the music begins. The colleagues know Kai, and they let him do his thing, no excessive attention. That’s good for him, he feels he’s taken seriously. Being the DJ is a serious task. Without one, it’s hard to enjoy your Friday night. An American guy opens his case, pulls out a saxophone. He wets the mouthpiece, listens to the music, and starts playing along with Kai’s songs. One can see Kai straightening up, growing taller.
“When it comes to interacting with strangers, Kai is more spontaneous than me,” says Kamila, as she tries to pry a dozen chocolate bars away from the already chocolate-smeared Charlotte. Kai listens to the saxophonist. A young colleague joins them, starts drumming on the bar, and the three of them band together, bobbing and dancing. Kai picks the songs and the others follow his tune. Eventually, Kai starts singing, in Hebrew, he sings other people’s songs, then his own, about how he likes to go bowling with his father. The people keep talking, the music complements the mood, and when a song is over, the three performers high-five each other, the colleagues clap, perfunctorily, pausing momentarily. Henry gives a thumbs-up, Kamila smiles with her eyes, and Kai grows even taller. He walks over to his dad, who teases him because he only sings ballads now and hardly raps anymore. Kai leans on his father, laughs bashfully and plays with Henry’s shirt buttons, too happy to stand still.
Time to bowl. They can’t be late. Kai is so pleased that he lets Charlotte have his seat in the back. Playfully, he pinches her nose, tickles her stomach, and she puffs up her cheeks.
“The girls love Kai,” says Kamila. “He brings color into their lives. When he visits, they hug him, kiss him, hang off his limbs. Of course, they have also experienced his tantrums, the strange behavior.”
“It scares them a little bit,” says Henry. “Though, if you asked them, I doubt they would say there was anything wrong with Kai.”
“He’s part of the family,” says Kamila.
The bowling alley is in the middle of town. While the others are busy putting on their shoes, Kai is already standing in his lane with a ball. Kamila sneaks away with Charlotte, who can’t stand the loud music, the screaming and cheering on the neighboring lanes. Kai throws like clockwork, strike after strike, but when it’s Olivia’s turn, he wheels over a helpful device: a ramp that looks like a dragon, which the little girl rolls the ball down in the direction her brother suggests. “Never look at the pins,” he says, always at the dots on the ground and the arrows on the lane. Two rounds only, Kamila had begged, which leads to Kai taking Henry and Olivia’s turns for them, playing against himself, though when he feels disturbed, he still sticks his white earphones in his ears. That’s in keeping with his dictum: “Don’t listen to anyone. Just play for yourself.”
Once he’s beaten himself, they take off for dinner. Turkish food. Kai has had his mind set on a hookah with apple tobacco since early in the morning, but now Lausanne’s frenetic energy has turned against the Markram family. There are no seats outside, where it smells like apple tobacco, and candles dance in the midnight-blue hour. Hookahs aren’t allowed inside, the air is thick enough, plates clatter, forks clutter, people talk at each other. Kai’s face comes undone; this is not what he imagined.
“Let’s go,” Kamila says, with an uneasy face. “Let’s go to the Italian restaurant, eat some pizza.”
The girls hook arms with Kai, his face remains closed, but he does calm down a bit. The five of them stroll hand in hand through the pedestrian zone. Five hundred feet and they reach an Italian restaurant with empty tables outside. Everyone seems happy, except Kai. “I don’t want pizza,” he says, and orders ice cream instead, which he spoons silently while playing Pokémon Go. Occasionally he says something with a brooding undertone.
“Check, please,” Henry says an hour later.
They go home hand in hand.
It’s Kai’s second victory over himself that day, more important than the one at bowling, and without earphones in his ears.