I’m riding the bus home, listening to music, when I hear the song fade out. My brother is calling for the third time that day.
“Hi, Joseph! How are you?” I ask when I pick up.
“It’s going well,” he responds. “How’s Washington?”
“It’s great. What did you do today? Go on a bike ride with Dad?”
“Yeah, a bike ride with Dad.”
“That’s awesome. I miss you so much. I’ll talk to you again soon, okay? I love you.”
We hang up, and I’m no longer on that bus. I’m maybe 12 years in my past, reliving a birthday party where a bunch of kids on a trampoline had cornered me for interrogation: “Um, excuse me, why did your brother do that? Why does he look like that? What is he saying?”
I held in my anger, watching as Joseph continued to bounce around, remarkably nimble in his tumbling. They laughed at him — at the same little boy who has Down syndrome and is now 20 years old and 2,700 miles away from me. He’s my most persistent caller.
Joseph is probably my family’s greatest hardship and our greatest blessing. To put it mildly, he was a brazen kid with a big personality and an even bigger attitude. He would jump into pools when he couldn’t even swim yet, take off his clothes on airplanes and prompt the classic, “Where’s Joseph?” whenever the front door open was left open for more than two seconds.
He’s been a lot calmer in recent years, but the quiet can portend rage. He troubles my parents with his violent outbursts and quick mood swings. The tantrums are partly my fault: Joseph has always been a stickler for togetherness, and here I am in Washington D.C., while, on the opposite coast, my brother is screaming at parents who would do anything for him and slamming doors in their faces. Before I know it, I’ll be grappling a lot more with Joseph’s future. I have to wonder whether he’ll scream at me, too.
Iceland, as CBS News put it, is on track to “eradicating” Down syndrome. Almost all women in the country terminate their pregnancies when a prenatal screening test predicts a chromosome abnormality. “Eradication” is abysmal terminology for a choice so laden with grief, but I understand that it boils down to that one incendiary word — choice. I can’t help but reflect on what I would choose if I were in my mom’s position, with a baby like my brother who could never hope to drive a car, let alone graduate from college and become fully independent. A baby who would grow up facing stares, whispers and the taunts of bratty kids.
A baby who would someday call his sister three times in 24 hours just to say hi.
The simple calls remind me of the joy Joseph has introduced to my life. (He really lives up to his name, which means “he will add” in ancient Hebrew.) I cheered from the sidelines when he plunged into the deep end of that pool, so wild and buoyant for an amateur swimmer with a heart condition. I laughed when, at 6 years old, he stripped on the plane to Hawaii, even though Mom was horrified and probably could have used five Xanax. I yelled, “Run like the wind!” as he tottered out the door and down our street with an admirable defiance, not even close to outpacing our much taller and faster mom. He’s lived quite a life, whether you factor in Down syndrome or not.
I feel guilty about how distanced I am from that life now, but at least we have our phone calls. Mom swears they snap him out of his darkest moods, if only for a moment. When he won’t come out of his room, she dials me up and yells, “Your sister is on the phone.” He bounds down the stairs right away.
To this day, my friends will rarely hear me talk about Joseph unless they ask about him. If he could read this, I’d want him to know that it has nothing to do with shame. It’s that when I tell people my brother has Down syndrome, I’m often met with concerned, apologetic looks. I succumb to painful flashbacks I still can’t shake 12 years later. In some ways, I get it — it’s difficult to know how to respond appropriately if you haven’t interacted with someone like my brother before. I may even inadvertently invite pity by emphasizing that it’s “hard.”
It is hard, just like any human relationship can be. I still consider my bond with Joseph the best thing that’s ever happened to me.
Here are some small acts of kindness that aren’t very hard:
- Smile at people who have Down syndrome when you’re tempted to stare.
- Teach your children to be respectful of people who have physical and cognitive disabilities.
- Stop saying “retarded.”
- Donate to or volunteer with an organization that helps people who have Down syndrome, such as the International Down Syndrome Coalition or The Arc.
And if you get the opportunity to talk to someone who has Down syndrome, do it. Friends, I’m sure my brother would love to say hello to you. Obviously he enjoys talking on the phone, and he’s never met a person he didn’t like.