Tuesday, November 5, 2013

Independence and the looming sense of doom.

How did I become so independent? That's the question I've heard a number of times from people who came to congratulate me after my Munich speech at the Conductive Education World Congress. Someone said "my daughter just lets us do everything for her". A conductor commented "I'm the b... who tells the child and the parents that it should do more to itself". And the underlining theme in all the conversations I've had with both friends and strangers that day was "I don't know how to relate to or replicate your experience". I wish I could say that there was one thing I could pin point to and say this is it. This is the defining moment that made me want to be more independent. But I think it came with time. All I know is that suddenly I was the thirteen year old who has his friends over with his mommy sitting around in the apartment. Or having my dad fix me breakfast. It wasn't something you'd share with your friends. It wasn't "cool" having a parent breathing down your neck. When my mom went back to work when I was fourteen I felt like I had a new lease on life. Of course there were the little things I always enjoyed doing for myself. I must have been seven or eight when on the weekends I was away from the Peto Institute my dad would sit me down in the kitchen and have me butter my own toast or cut my own tomato. I'm still not very good at slicing things, but I like to fix something, by myself from time to time. I remember watching American movies with people in wheelchairs who were active and mobile, accomplished and doing things for themselves. I wanted to be like that, I wondered why can't I be? I guess my drive to independence may have come out of nowhere. There certainly wasn't any expectation in my family that one day I'll be making it by myself without anybody's assistance. But I felt crushed and suffocated by the vision of what I thought would be my future. Some version of my life that I would have to settle on. An imitation of life under somebody's care. I guess the fear of what it may be made me rebel against it. But it took tame. And let me say it again, we didn't even dare to dream I'd be as independent as I am today. But then, I line in a reality, in a country that allows me to. And if I don't believe that I can, that I should do it, why would I even try. Yes, I understand why for some people it's difficult to make that step and push for independence. Because what if you are not, try as you may, as physically able to make it? What do you have to fall back on? There would be nothing left to dream about as the illusive dream was just crushed by the harsh reality. What do you have to get back to? How do you get yourself back together. Studying abroad was something I dreamt about for years. But most times I didn't even dare to say it out loud. It's not that my parents are not supportive, they always have been. But the idea of me going somewhere by myself wasn't very realistic, even for me. Such eccentricities. The plan for me was to ideally find a job somewhere under my brother's wing. And then you learn to settle, because this is your life, this is your reality and it wasn't designed with people in wheelchairs in mind. I grew up with an odd looming sense of doom I saw my future as. How do you fight against it? What's the use in trying?  The fear of failure is something that stops many of us from finding out what we are actually capable of . And the drive, the desire to try has to come from within you. Guess what. The more you get a sense that you can function by and do things for yourself the more you want to do it. But it cannot be forced on somebody because you will grow to resent it. Nobody wants to have their life turned upside down, and I don't think it's a Conductor's place to comment on a parenting style or tell the family how they should live. Even it makes perfect sense and the comment comes in good faith they are always the outsider who upsets the dynamic by saying you're doing this wrong, now raise your child like this.I don't think anybody likes it when someone points out all the things in their opinion you do wrong I remember not liking when any of my therapists did that either. For people who spent 30 minutes a day with me at most, they sure had a lot of ideas as to what my mom should and should not be doing. And often the tips were sound. But the delivery, the know-it-all attitude felt offensive.

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