Thursday, 30 November 2017

'NOTHING ABOUT US WITHOUT US'

Old Polish (and Hungarian) saying

Towards democratising CE
Two days ago a posting Conductive World drew attention to a past conflict between CE and a wing of the disability movement. What approach to this might CE adopt, it asked:

http://www.conductive-world.nfo/2017/11/bad-opinion-of-ce.html

Four years ago Ralph Strzalkowski had addressed this question on his own blog, offering a useful basis for serious consideration of this matter.


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 corrective device. But the question that 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 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 Pető Institute in Hungary, the facility I credit for the level of my physical independence and ability that echo that same sentiment – which in my view are not exactly fair. The authors compared 1980s Budapest to today's New York city and said they had 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 was that the Hungarian Government told the Pető crew to deal with the disabilities in the country to the best of their abilities.


There are a few things that 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 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 had known as a child in the 1980s 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 Pető'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, but 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 that people like me had to look forward to was special schools, and special manual labour 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 that 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 and spend all my life at home when I get too heavy for people to carry me. But this wasn't something that the Pető 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 overnight to fit my needs. And changing people's attitudes takes years if not decades as well. After 24 years I feel that Poland still has a very strongly Communist-like approach to its citizens in wheelchairs as well as to citizens in general. Back home, in order to work, to be employed in any capacity you need to be cleared by a labour medical doctor and pass regular check-ups. 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 at 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. The Americans with Disabilities Act was passed in 1990. Before that the US had 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 mould to the world's limitations, but mould 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, Pető says to try, to fight, to be the best that you can, 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 to expect 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 development of the physical abilities, mobility, body-awareness to that extent, elements that I find useful even as I live in more accessible Florida. In my mind, both need to change, grow and adapt – both the children as well as the surroundings they live in.

Now I think that the proper approach is both, with the truth 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 that is what amazes people when they see me living, working, travelling by myself

http://blog.lawyeronwheels.org/2013/11/the-new-normal.html?m=1

Nihil de nobis, sine nobis

Ralph grew up in Poland and spent some of his childhood in Hungary, and he first studied law in Warsaw. He possibly knew the sentiment within 'Nothing about us without us' well before most English-speaking disability activists heard this slogan.

The environment in which Conductive Education increasingly will have to develop in the twenty-first century is one in which the growing numbers of its adult clients (and this refers particularly here to citizens who have experienced Conductive Education for much of their lives) will one day outnumber 'the professionals', that is the conductors and the other adults with roles in providing conductive services.

Questions such as Ralph addresses here will have to be considered with this in mind not through 'consultation', not 'in partnership', but out of a relationship of a rather different order yet to be defined, a democratic one.

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