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The sky‘s the limit for Sebastian Urbanski

February 07, 2019
topic:Human Rights
tags:#Sebastian Urbanski, #Lebenshilfe, #Down‘s syndrome, #Germany
by:Frank Odenthal
For the very first time, Lebenshilfe, a german-based charitable organisation to support people with disabilities, has appointed a person with Down syndrome to their federal Executive Board. Sebastian Urbanski, a 40-year-old Berliner, used to work as an actor, dubbing actor and writer. At Lebenshilfe, he will act as a "self-advocate" for the needs of disabled people. FairPlanet spoke to Sebastian Urbanski about his new job.

FairPlanet: Sebastian Urbanski, how would you describe your duties in the new position as a board member of Lebenshilfe?

Sebastian Urbanski: First of all, I want to say that I am very proud that Lebenshilfe has appointed me to the Executive Board. Now I can really stand up for the sake of the disabled. I think it's very important that everyone gets the help he needs. It is not without reason that Lebenshilfe is called Lebenshilfe (meaning literally “life support” in English). From my own experience, I know what problems there are in everyday life for many disabled people. And I would also like to talk about this in the Executive Board. I want society to accept us as we are. In which area and with which task I should work, has to be discussed. I would like to make sure that there are more affordable and suitable living spaces for the disabled that are also built directly for shared flats and assisted or inclusive living and not just condos.

What will be the biggest challenges or problems?

First of all, I have to see how it works in the Executive Board. I've never done anything like this before. I have to learn a lot of new things. But I've always wanted to work with Lebenshilfe because I think that the way people think about the disabled needs to be changed a lot. There are also many bureaucratic barriers that need to be opened up.

How did your environment react to your new task, your family, and your friends?

Everyone is thrilled, and they think it's really great that I made such a big jump. They are all thumbs up for my new job! The RambaZamba theatre I work in is also enthusiastic and wants to support me. And many media - newspapers, magazines, radio - have reported on my appointment or want to interview me.

In the media, you‘ve been referred to as the first person with Down syndrome, who was appointed to the board of directors for Lebenshilfe. How do you deal with the fact that the public is so focused on the disability?

I'm almost used to that. I have often been the first person with Down syndrome to make something big. I have written a book and did many reading tours. In 2012, I was at Germany‘s Federal Press Conference to speak up against prenatal testing. I was the first person with Down syndrome to speak in the Bundestag. And now I am the first person with Down syndrome in the federal Executive Board of the Lebenshilfe. I think it's important that this is said and appreciated. Because I show what we can do. I am what I am, and do not want to hide. That's what people with Down syndrome had to do for long enough.

About 50,000 people in Germany live with Down‘s syndrome, which corresponds to 0.06% of the population. Their life expectancy has improved enormously over the past 30 years. In 1984, it was about 25 years; in 2014 it was about 60 years. The age of the mothers at the time of conception seems to be significant. A 21-year-old woman has a 1 in 1500 risk of having a child with Down syndrome, while a 41-year-old woman's risk is at 1 in 80. Yet, 80 percent of women who gave birth to a child with Down‘s syndrome are younger than 35 years old. ()

Sebastian, in the past you have been working as an actor. So, being on stage and in the public spotlight is nothing new to you. Is your experience as an actor beneficial to your new Lebenshilfe responsibilities?

Absolutely. In the theatre, I stand in front of many people and play for them. This gives me self-confidence, even at press conferences and events to speak. This is always a great pleasure and honour for me.

Do you see yourself as a role model? What tips would you give to other people who may also have Down syndrome, especially with regard to career opportunities?

Actually, I want to encourage everyone to dare something. There are so many different areas where you can do something that is fun and that you can learn with the help you need. A friend of mine works in a kindergarten, another in an urban swimming pool. Yet another friend works at Café Leichtsinn, an inclusive bar. There are magazines and programs made by people with Down‘s syndrome. And there are many theatre and dance groups. The important thing is that you are happy with what you do and want to achieve something, even if it is difficult.

Your career so far seems to be a success story. But in the future, for example, through pre-birth genetic testing, there may be no more people with Down syndrome in the world, possibly no more people with disabilities in the distant future. What do you think about such prospects?

With so much diversity nowadays in our society, people with disabilities should also be included. You cannot just sort them all out, do not throw them away like a broken thing. We too have the right to live. I think prenatal testing is not right. I would ban it. But if it's already done, parents need to be better advised of the great opportunities their child has despite Down syndrome, so that they opt to choose the child and remain brave and strong. My mission is to save the people with Down‘s syndrome, with disability, no matter which one.

Article written by:
Odenthal Frank_Autorenfoto
Frank Odenthal
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