Long live the carnival: For Paul Ittenbach, the German fifth season is something very special, as he makes costumes for his electric wheelchair every year. Why his carnival club is close to his heart, what he owes to his wife and why he feels that people with disabilities are not welcome everywhere, he tells us at REHACARE.com.
Name: Paul Ittenbach Age: 48 City: Troisdorf, Germany Occupation:Retiree Impairment: Due to poisoning, my muscles and nerves are deteriorating. I forget a lot of things and no longer remember other things, no matter how much my family tries to help me. There is no name for this disease. It causes non-stop pain and mobility restrictions (I use a power wheelchair).
Paul Ittenbach: I mostly laugh about myself: When I cannot enunciate words or twist them around even if someone just told me how to pronounce them correctly. When my family and I joke around at lunch or dinner. Many things make me laugh and laughing makes me happy.
What have you always been wanting to do and why have you never done this so far?
Paul Ittenbach: Actually, I have always wanted to be part of the German TV Show "Alarm für Cobra 11" (English: Alarm for Cobra 11 – The Motorway Police). I have even applied to be on the show but never got a callback. That’s when I abandoned the idea because I think people don’t want to see people with disabilities or only want to see them if it happens to be popular in the media at the moment!
Which person has influenced you most? And why?
Paul Ittenbach: Definitely my wife and my two children. My wife and I met when I was healthy. When I got sick and it became obvious that I would never be healthy again – and never again be the person I was before all this – I fell into a deep depression. I knew that I didn’t want to go on living like this. That’s when I decided to end my life. I didn’t succeed in my attempt because my wife happened to come home early that day and found me. Any other woman would understandably have left me, but my wife stayed and showed me the way back into life. We weren’t married at that time. She went through a lot with me before I was finally back on track. Today I am grateful that I didn’t succeed in my attempt and I savor every moment with my family even if I am constantly in pain and often forced to lie down. But even then I am glad to be here because there is nothing greater than my time with my family and friends. You have to face life’s challenges as they come. Nobody ever said this was easy. Things are as nice and beautiful as you make them.
You have the chance to become the Commissioner for the Disabled in your country. What would you do first?
Paul Ittenbach: I would increase awareness (education) and teach people that a person with a disability is not contagious. And make them understand that people with disabilities want to live and be accepted like any other person as well. I would also promote more events for people with and without disabilities, so we can all get together and learn about each other.
Paul Ittenbach in the middle of the Siegburg Honor Guard. This is where he feels comfortable - not only in times of carnival. Tinkering with his "wheelchair costumes" is his hobby.
What is especially near and dear to you?
Paul Ittenbach: I love carnival (English: Mardi Gras). My family and I are members of an inclusive Mardi Gras Club (the Siegburger Ehrengarde or Honor Guard), which – as far as I know – is the only one of its kind in Germany. I feel accepted in this club because it includes people with various impairments, who enjoy their time together and have fun and dance with able-bodied people.
I myself don’t dance in the club because I am not physically able to do so. Yet I am still included wherever that’s possible. That means, at our annual session, I am on stage and included in the show dances by making my own costumes from cardboard or paper mache for my power wheelchair. I also showcase them during the Mardi Gras Parade because it allows me to reach more people. I need several months for this because my health often fails me (the pain and my inability to move). Of course, I also seek help for things where my motor skills let me down, but I prefer to take my time and do things on my own. I am also trying to prove the point that it doesn’t matter how sick you are. Obviously, my self-made costumes are not as fabulous as the ones people without disabilities are able to make and wear but that’s not what’s important here. I have built a car and a magic carpet without having any prior experience. I just tried and did it.
I would like to be ...
Paul Ittenbach: Let’s see ... since I have my magic carpet, I would love to be part of the Musical Aladdin one day. Of course, I know that’s not possible because – for starters - I can’t remember any lines. But the thought of showing my carpet on a big stage is a beautiful and powerful thought.
Which question would you like to get answered?
Paul Ittenbach: I have a question that doesn’t have a one-size-fits-all answer, though I keep wondering: Why is it so hard for healthy people to accept and respect us as self-determined people? Why do they consider us a nuisance, as if we were freaks of nature that nobody wants or needs?
To all of you out there: We didn’t create ourselves and we didn’t choose to have a disability. Come and feel my chest and notice that my heart beats just like yours. We laugh, we cry and we have feelings just like you do.
What else I wanted to say about me...
Paul Ittenbach: I will never give up and I have faith that YOU! will one day look at us and see a human being.