Ten Questions You Always Wanted to Ask a Person with Down Syndrome

By Johannes Musial

Jonas is 22 now and lives with his parents in the town of Rangsdorf, just outside Berlin. He used to want to be James Bond or a paleontologist, but after doing an internship at Berlin’s RambaZamba theater, he grew passionate about acting. Since then, he’s appeared in six plays and one film. We met in the theater’s auditorium for a chat.

What’s not fun about having Down syndrome?
It’s pretty annoying. For example, I often deviate from a subject, when I don’t find it interesting. But people with Down syndrome can’t do anything about having an extra chromosome. Some say we have a mental handicap. That isn’t exactly true. I am indeed a little limited when it comes to certain abilities, which to others come easy, but I know quite a lot about history, and I have a very good memory too. I know the Iliadand the Odyssey almost by heart—and Wagner’s Der Ring des Nibelungen too.

Is there anything you’d like to be able to do, that people who don’t have Down syndrome can?
If I didn’t have Down syndrome, I wouldn’t be the same person—and I like who I am. There are a lot of things that I would like to be able to do of course, but nobody can do them. For example, I would like to found a league of superheroes and be able to create my own superheroes.

Is it annoying that you can recognize Down syndrome just by looking at someone’s face?
The fact that you can see it isn’t so bad. But when someone tries to reduce me to my Down syndrome, that annoys me.

Why do people with Down syndrome always laugh so much?
If something is funny, then we laugh. Or when we’re being mischievous—though that’s not so nice.

How hard is it to find a partner?
It’s pretty tricky. I’m waiting for the right person, but I don’t really believe in love anymore. I used to have a girlfriend, but it didn’t really lead to anything. Maybe it’s my fate—I’m not sure I’m made for relationships.

Would you prefer it if a girlfriend of yours also had Down syndrome, or not?
That’s a good question. I actually would rather not have a girlfriend with Down syndrome because I have it, and it’s not always easy. But it would also be fine if my girlfriend had Down syndrome.

What about children?
I love children, and it’s a big wish of mine to have my own children. But you really have to want it, and I’m still searching for what I really want.

Would you have your baby tested for Down syndrome before it was born?
You’re talking about abortion, right? I would give anything to have a child—even if it had Down syndrome. But I would have to decide that together with my wife, of course.

What do you think about the fact that some people have abortions, when they find out their baby will have Down syndrome?
Good people love children, whether they have Down syndrome or not. If you abort a child with Down syndrome—I’ll say this flat out—then you’re a bad person.

Do you wish you didn’t have Down syndrome?
That would be amazing, obviously. But I’m actually a really normal person, just with an extra chromosome and a scar on my chest, from my heart operation. I don’t feel disabled. It’s more like, I feel that half of me is affected by Down syndrome and the other half functions properly.