Friday, November 29, 2013

The new Normal

My brother had crooked teeth when he was little. I know that he hated wearing his retainer growing up and that's why some decades later he doesn't exactly have a million dollar smile. My mother wanted to spare me that experience at least -although most of mine grew straight - some still could have benefited from a had to corrective device. But the question she had to ask herself was: is it worth it. The pain, the embarrassment,  the routines, the social stigma. And to what end? What would have been the benefit? Normal teeth, a problem that needed fixing but at what price? Does the goal justify the means and the costs? Is it fair to constantly be seen as a problem in need of addressing and fixing and for what, to be normal? Who says what this "normal" is exactly and why we all need to be "normal" in that one established way.
Andrew Sutton recently asked me to look over some very severely negative opinions  of the Peto Institute in Hungary, the facility I credit for the level of my physical independence and ability that echo that same sentiment- and which in my view are not exactly fair. The authors compare 1980's Budapest to today's New York city and say: they made us feel like we were a problem. An issue that needed correcting. We had be transformed, become normal, and who knows what this normal is anyway, while New York City finds new ways to adapt, include, be accessible for people with special needs. The accusation being that the Hungarian Government told the Peto crew to deal with the disabilities in the country to the best of their abilities. There are few things I find extremely problematic with these statements. First, I find New York City probably the least wheelchair accessible city I have been to in America. It is not a good example of how things have progressed. Much better than Budapest for sure, but if anything it leaves me depressed every time I'm there when I'm faced with all the things that are beyond my reach there and places I can't get into. Yes, I share their sentiments that living behind the Iron curtain had made me feel like I was a problem in need of fixing and every day I worried what would become of me. And I can't really contrast it or compare it with anything, because all I have known as a child in the 1980's was life in Poland and Hungary and they were in that sense alike. And you in a way get used to it.  But it wasn't Peto's fault. If anything it was the only one of the countless rehabilitation facilities I've been to that didn't feel like a holding place, like we were doing something constructive. It was the communist government that kept people with disabilities out of the public view. They didn't fit the description of the happy, care-free, healthy society countries of the Eastern bloc were trying to present. Traditional facilities like mainstream education were beyond our reach for policy reasons. All people like me had to look forward to was special schools and special manual labor work places like gluing dolls and putting pens together. Even if that wasn't the case, there were steps, stairs, everywhere you went. You simply couldn't get around in a wheelchair without some basic ability to walk up, even to get on the bus. And I feel first and foremost this is the basic problem that the Budapest Institute was trying to correct. I grew up with a notion that I will either be "normal" to the fullest extent possible or I'll work ans spend all my life at home when I get to heavy for people to carry me. But this wasn't something the Peto Institute taught me. This was the reality facing me outside of my window. For as long as my parents were around and had the strength to deal with me, yes I could have some form of a life, but what would happen next? Even as trends changed after the fall of communism in 1989, you couldn't rebuild the city over night to fit my needs. And changing people's attitudes takes years if not decades as well. 24 years I feel that Poland still has a very strongly communist like approach to its citizens in wheelchairs as well as citizens in general. Back home, in order to work, to be employed in any capacity you need to be cleared by a  labor medicine doctor and pass regular checkups. If you have a disability there are committees that deliberate, need to see you in person, look over your paperwork and determine your fate. In Warsaw I'm permanently unable to work and they prefer to pay me money to keep me home. In America I'm licensed to practice law in two states.
But before we go on about how inclusive America is and Europe isn't please remember that it isn't exactly fair to compare 1987's Budapest with 2013 New York City. Accessibility is a fairly new trend. Americans with Disabilities Act was passed in 1990. Before that US has as little clue as what to do about people with special needs as the Europeans. So the Hungarians did what they thought was best to help- To give people skills to try to help them exist in a wheelchair unfriendly world. And some of those I use every day, because often I'm in a position when I need to figure out how to get around a problem when a grab bar isn't there. Recently I wrote:
  "Not until I moved to America had I thought that there is another way to approach this. Not have me mold to the world's limitations, but mold the world around me so it can have less limits. In that sense I started to think of Conductive Education as a counter movement to the American accessibility trend. Yes, Peto says to try, to fight, to be the best that you can, but it seems that he's essentially saying change the individual, because the world will not change for him. And in that way, while I gained more ability and just enough to function in America, I do think it conditioned me to accept the world as is and expecting less out of life often feeling inadequate. Americans are getting rid of stairs, putting in lifts.  You can get around more and you get to experience more in life. But they also sit the children in wheelchairs early, don't promote developing the physical abilities, mobility, body awareness to that extent, elements I find useful even as I live in more accessible Florida. In my mind, both need to change, grow and adapt- the children as well as the surroundings they live in."  
Now I think that the proper approach is both and the truth is in the middle. Change what you can, adapt to what you cannot. Being fit and able is still useful in a host of situations and perhaps it's my ability to get things done for myself is what amazes people when they see me living, working, traveling by myself

1 comment:

  1. Thanks for that, Ralph.

    I hope that no one calls you an Uncle Tom.