Sunday, March 30, 2014

A Protest

Polish mothers of children with disabilities made national headlines in the last few weeks when they decided to stage a protest and rally at the Parliament building. Among the angry- at the very least a very prominent group of parents dealing with Cerebral Palsy. They want more financial support, more benefits and to have the stay at home mom practically recognized as a profession, deserving minimum wage. Mothers with children sitting in hallways versus unsympathetic politicians make for many a Kodak moment. They're determined. They're distraught. But to me at least the matter is not as black and white as media choose to portray it. To me it's one part of a broader discussion about disability and should be viewed in proper context. I don't think that creating a public spectacle with children in the middle helps the cause. I don't think reducing disability issues to monetary demands is the right way to go. And I for one detest framing my disability as something that people should pity,  a miserable existence  in need of compassion. I think protests like that are a bit shortsighted- I would think at one point these parents would like to get an education, a job, be treated equally, as productive members of the society. They will face a lot of prejudice, hurtful assumptions and unpredictable reactions and having engraved this image of just asking for money in the public's mind will surely not help. Yes, every little helps if only one of the parents is working. But to me it's a temporary fix. A stay at home mom should only stay at home for as long as she is needed there, to help the child transition into rehabilitation programs and regular schooling. Money helps for the time being but the stigma is forever.  And yes, not every child, not with every type and extent of disability can be independent. But I grew up with many special needs children around me never outgrowing the always present mother, confined within the four walls, relying on social services because they were never challenged and seen as people who could do more.  I once was like those CP children in the pictures and I must say I'm conflicted. Just like many of the angry mothers my mom stayed at home until I was 14. It was time for the both of us. I needed to be as regular a teenager I could possibly be  and she needed to find life and fulfillment outside of the house. I needed to stop being her "special cause" and she had to focus on things other than me. I on the other hand wanted to let go of all of the assumptions and lowered expectations and think of a future where I'm not cared for for the rest of my life. And this mission many years later led me to America. Poland that I left seems pretty much like the country I read about a decade later. Disability inclusion is still discussed in terms of financial payouts or employment training courses that will render the disabled useful. It's perceived as a social problem, a burden. Work places are offered tax incentives and benefits for taking upon themselves the brave enterprise of hiring a person with disability. Very little attention has always been given to creating an empowering, inclusive environment. An accessible world, where you can be as independent as possible. A time will come when a child wants more. Trust me, nothing is more frustrating that a feeling you get when when you want to set out to achieve your own goals, but the world around you is holding you back. You want more, but as at first you think it' s you, you soon realize that where you are simply wasn't created with people like you in mind. Money can buy you a lot of things. But it will not buy happiness or change  how you feel about yourself and your condition Human emotions only get more complicated as we grow older. That was how I felt ten years ago as I left my home, my family, my country. I could have stayed and tried to silence how year by year I grew more and more unhappy, frustrated and lost. I could have said, it's nothing- everybody feels this way and how dare I dream of a different life- I got it made.But it seemed like perhaps it wasn't too crazy to see yourself as "something more" while my country saw me as a problem.  It seems like not much has changed. To the mothers occupying the Parliament building I say good luck. I wish your cause was more about creating opportunities than money.But most of all I wish you ramps, accessible buses, elevators and sidewalks- your children will need them when they are no longer children. I wish on you- that universities and workplaces see their talents and true potential. That politicians that you ask for money today as well as strangers on the street no longer see them as charity causes and people with a hard life. A lifetime of respect is worth more than any spare change you get today. This may not be what you think about today, but give yourself five, ten, fifteen years and you will. Trust me, I know.

 

Wednesday, March 26, 2014

My childhood with Mary Poppins: Read to your children!

A recent Disney release sent me down memory lane again. It was "Saving Mr Banks" that chronicles, although some may argue distorts the story behind turning one of my favorite book series of my childhood, "Mary Poppins" into the successful Julie Andrews musical of the 1960's. The movie mainly focuses on the strained relationship that P L Travers- the author who was used to always getting her way and made herself into a proper, sophisticated English lady that wasn't fond of emotional displays, people or children for that matter, had with Disney and his ever commercial empire of joy as well as her difficult childhood in Australia. I'm less concerned with how accurate the movie really was. Travers who detested pretty much everything about the film, from casting to the cheerful tone and songs and was stubborn and difficult to work with in the film is shown to come around and is moved by the musical's closing act as she reflects on her own upbringing and loss of a father through flashbacks. But what I wanted to reflect on mostly, was what Mary Poppins meant to me when I was a child. I know that I've written before about how reading books shaped my childhood and I used to practically devour them growing up. "Mary Poppins" takes me to a period when I didn't do the reading. My mom did. She read to my brother and then to me, as her kids came seven years apart and she claimed that she loved getting to revisit those books and the zany, magical adventures they contained. When I was little, having my mom read to me was more fun than anything I could watch on TV, any place we could go or any game we could play. You just couldn't wait to find out what happens next. Getting comfy and waiting on the story to go on was pretty much a ritual and it was something you looked forward to. That's how my mom got my brother and me and any child in the family that felt that a book was too intimidating into reading- by reading to us first. It's funny how my favorites, the ones I remembered, where the three quintessentially British series- "The Borrowers", "Five Children and It" and "Marry Poppins". There was something fascinating about people having that upbringing. Being proper and polite, while sarcastic at once. Keeping up appearances, having afternoon  tea, dressing up for parties- it was so different from anything I could experience in communist Poland which at the time was grey and sad. I connected to those books quite strongly, because while my mobility was limited, these people were having the most incredible adventures you can think off. Defying laws of physics and reality, the only thing stopping them was imagination. Imagination I had plenty of. And through my mind I could make my life and the world around me as fascinating as I wanted.

Just like Travers I was conflicted about the Disney adaptation. It looked glorious, the songs were nice and I was a big Disney fan. The problem was the Julie Andrews role had nothing to do with the book. I don't even care that she's too pretty and young for Mary Poppins as the book clearly makes her older and rather plain looking. The Mary Poppins I knew, and what made the character so unusual was that she was snarky, sarcastic if not harsh, distanced and cold. As my mom did voices when reading different parts it was all reflected in how Mary spoke to people and she if needed could cut them down to size with a mean look. Demanding and controlling and yet, you had no doubt that she cared for and loved the children. And that contradiction made her stand out from any other nanny story that comes to mind. The movie also made me reflect on how through reading my mom gave me memories. It's something I look back on 30 years later as I watch clips of that old Disney film. That's funny when you think about it- written words, somebody else's story, yet it's a memory and a fond one. Read to your children. Make fond memories and inspire them, ignite their imagination as mine was.

Sunday, March 23, 2014

Don't worry.

All through elementary school my parents carried me up the stairs to the classroom, five days a week. Every year it was getting harder. I was getting heavier and they were growing weaker, but it was the devil we knew. We only had to cross a narrow street to get there and they could keep track of everything as they could see the building from our balcony and they were just a phone call away. After eight grades (which was how the education system in Poland looked like back then) we had to figure out what to do about high school. It was only going to get harder from that point on, I wasn't getting any smaller or lighter and there was no place I could attend that wouldn't require a drive through Warsaw every morning. My mother confessed years later that she was losing sleep over this for at least two years before my graduation. What will become of me? How can we make it work? It feels silly now. Years later I ended up at Warsaw University which required me to go half way across town every day, first with my parents, later without them, but back then it felt like a really big problem. For a while we considered a bunch of alternative secondary schools, such as "special" or integrated institutions. I remember how even thinking about it would get me really upset. I wanted to be like everybody else. I wanted to compete and be challenged and yes, dare I say it, be the best one in the classroom there is. Places designed for kids with disabilities at the time were known for being more like storage or day care than an actually stimulating place of learning. We've spent so many years, so many sacrifices trying to keep me away from that system and I was always one of the top students. And now I was looking at going back? I really, really, really, really did not want for that to happen. I felt I was being punished and I didn't do anything wrong. I was the success story, the example other parents used when they pulled their Cerebral Palsied kids from special schools and put them in "normal" facilities. If I could do it and succeed, they wanted to try to. And now it felt like we were hitting a brick wall. And it had nothing to do with me not being "able" enough, because just on my scores alone I could've competed for a spot in one of those top ranked Warsaw high schools. It was a host of reasons, very few having anything to do with my potential. We were powerless.  And then something happened . Another elementary school in our area was being converted into a high school. It didn't have a name yet (and I ended up getting diplomas with that section crossed out for about three years) but it was a regular school. A school that "walking" kids went to. I ended up applying and passing early admission exams to their advanced math, physics and computing profiled class. Granted, I didn't care about math or physics, not in the slightest. But this was the only "advanced" program of any kind the school offered and it was only a few blocks away. This was then that mu mother told she learnt not to worry too much in advance as things tend to sort themselves out in the end. Looking back I regret we were not more adventurous and ambitious. I could have easily tried out for one of those snobby schools in town. But then I ended up graduating from one of the top law schools in the country. My high school didn't have traditions, didn't have rituals or famous alumni, but as it turned out I got to compete in life with the best of them. Yes, my high school experience was not fun. I didn't have many friends, I was stressed 24/7 and I did not enjoy those years at all, but perhaps I emerged on the  other end a better person because of it? High school after all came with a set of challenges of its own. It took only a little concrete to create a ramp over the 3 little steps leading to my primary school's door. My highschool had an impressive set of stairs- a physical exercise just to get it. Problem solvers we are, we also found a solution. My dad designed an elaborate ramp that went around in twists and turns and then demanded that the local authorities build it. And they did. The school decided they should do their part to accommodate me as well. And they renovated one of the top level bathrooms to include a wheelchair accessible cabin. Of course you had to climb up the stairs to get there as the building had no elevators. At the time I didn't like the idea, as I was going through  my "I don't want to be treated any different" phase and this I felt put the focus and the attention on me. My parent's backs finally got some rest as it was my classmates who carried me to the rooms in my wheelchair this time around. And I got to stress over normal, every day things like every other kid- like my math teacher who scared the living daylights out of me or physics that I grew to loathe with great passion, or our biology professor who would routinely give failing grades on her first round of  questions.

Wednesday, March 19, 2014

A History of Education

My grandmother never had the same opportunities me, my brother or our parents had growing up. But we tell her story with great pride. Growing up in rural Poland she was only able to complete a few grades of elementary school. But she wanted to learn. She loved knowledge so much that, unable to further educate herself, she famously attended her last grade three years in a row. This is how much she didn't want to give up on it. She later taught herself how to run a business, which involved a pretty good understanding of accounting, businessplan and economics. And she made sure all of her children  graduated from universities with advanced degrees. She couldn't really help them academically, but she did watch them to make sure they did their work. Although my mom now admits that as her mother wasn't as involved in their schoolwork to thoroughly investigate, they did sneak off at times. My uncle is a physicist- he designed airplanes. My aunt is a chemist that worked with the Polish National Research Committee. My mother is an accountant. After talking a 14 year break to raise me she took courses to be up to speed and went back to work- or I should say- got a successful career in her 40's. I don't know if she does it still, but I have an image of her reading on the latest taxation laws in her spare time at night. After work. For fun. But even before that I grew up with my older brother as an example. Perfect scores, contests, an Olympiad in Biology- I remember seing his diploma every day as I exercised in his room. Luckily, there was a seven year age gap between us. And we liked different things. He liked math and science, while I was very much into Polish, writing and languages. But I always grew up with a strong conviction that good grades are important. I also remember flipping through my mother's old university grade book (although my grades many years later, were much better) thinking that college must be a truly magical experience. Of course I was perhaps nine at the time. But for me, school, particularly when I was younger- was the one field where I could compete with my classmates as an equal. Where my physicality didn't matter. Often they didn't like me, because I would volunteer with an answer or raise my hand before anyone else finished. I couldn't run, play, do sports, defend myself, but this, this I could do. And I will freely admit I was not always very gracious about it. Yes, we have a history of passion for education in my family. A legacy that I carried on not only when I graduated summa cum laude from Warsaw University Law, but  also when I moved to America for my LL.M and Juris Doctor. And yes, I've gotten a few awards for it over here as well. I have a great respect for people who are accomplished academically, because I know what it means to me- a drive ro learn and understand new things. Hard work, dedication and ambition. And I can only hope that my brother's children will carry this family tradition as well

Sunday, March 16, 2014

Reputation

A few months ago I attended an advanced screening of a war movie with Mark Wahlberg. A friend came up to say hello just before the film started, with a female companion I barely knew. "I hear you're a bad tipper"- she uttered as they were leaving. Apparently a friend of hers heard it from another friend who worked at a restaurant I haven't frequented in seven months or more. This comment got me pretty upset and for perhaps twenty minutes of the beginning of the film, that I was invited to see a few weeks before the general public instead of following the plot, I've been trying to figure out who this mysterious person who had waited on me may have been, if there was ever a time that I didn't leave a 20% gratuity which is what the custom here dictates and what I always do and what kind of a person would point out customers and gossip about them. But for the life of me- I couldn't remember. Especially since the server was apparently male and I only recalled waitresses that work them, most of them my friends in real life. Given how badly servers tend to be paid in America, and I know how my friends struggle I just tip them what's expected. And it's not up for debate if I liked the person or how they handled my order, was my food hot or cold or tasty or slimy, or even if they were particularly helpful. Most of the time  at that place you do wait forever and the staff tends to ignore you. And don't even bother to ask any details about your meal. It doesn't matter. You tip regardless. I was very hurt when I heard that comment precisely because- it simply wasn't true. And not only did it ruin my night, but I also knew this is how rumors get started. I'm one of the most recognizable people in this town. I'm simply the guy in the yellow wheelchair. And I'd like to think I'm likable and fair. But everywhere I go, people are more likely to remember me. So I try to be extra careful about what I say and what I do. I try to give people as few reasons to talk about me as possible. Had I lived in New York City I would just go to a restaurant three blocks down and never go back to a place where somebody looked at me the wrong way. But this is Gainesville. This is a small town. If you stick out people remember you. It took me many years to build a reputation. It takes a few seconds, a sentence, no more- to trash it. All this time when I've been trying to establish myself within this community. For the most part staying out of people's way. If I'm here to be a lawyer, I better act it. Act my profession and my age. And never do anything that would make my family ashamed or disappointed.  And mostly I want to be able to enjoy my meal and not have to wonder what the server really thinks of me.  And not only will they think it. They will remember me. And tell a friend. Who will tell another friend, who will then take it upon herself to ruin a night I was waiting for. Misunderstanding for sure, but it's small things like that unaddressed and unexplained that linger the most.

Thursday, March 13, 2014

Conductive Education: A wrong question asked.

I feel we've been asking the wrong question all along. It's not "Is Conductive Education a scam". Those who support it will support it. Those who don't know about will continue to be in the dark about it. The issue is rather "Is it unreasonable for a person who is not familiar with the mechanics of that rehabilitation method to think that it is a scam." Has the Peto community been transparent and approachable about what it does and how it does it? My post caused one of CE practitioners to comment with frustration about parents' "unreasonable"  expectations. That they are there to "make their child walk" "like a form of therapy". Let me ask: who should be educating the parents about what the method is likely to do for them? Should they just educate themselves, preferably online? I think that when you take a child in the very least you should do is explain what is likely and not likely to happen. Let me say this again: I've spent a considerable amount of time in the Peto Institute. We were hardly the new arrivals there. And all throughout the little under four years that I spent there they have believed that the point of me being there was to make me walk. And they were chased away from the rooms with exercise sessions every time they appeared, so they wouldn't see anything. God forbid my dad would try to take a picture. I see this happen over and over again. A controversial posting questioning the validity of CE appears online. Conductors then discuss among themselves how ridiculous and frustrating the allegation is. How the person misunderstood the basic principles with CE. And after having convinced themselves and each other the problem disappears. They're content and move on. Well, if you're a Conductor you don't really need convincing. Nobody needs to tell you that your world has merit. And the world needs to know. Put yourself in the shoes a parent. I don't mean to say the Conductors who are scattered around the world are necessarily the ones to remedy this problem. They have an institution with a tradition with many decades of practice and training behind them that gave them their skills and sent them off to the world. I will never understand how it's not the Peto Institute in Budapest were the CE approach originated that has the loudest voice, produces volumes and research based on decades of case studies and puts together big events. Why was the World Congress in Munich? Why is it always the lonely conductor in Omaha, Nebraska who feels he or she needs to defend their work? And I'm a bit surprised how CE now seems to present itself as something that the community passion keeps alive. Almost like an open source rehabilitation method if you will, constantly under attack from all the naysayers. Let's  be honest. In the 1980's the Peto Institute was a money making machine. In a time when Eastern Europeans were not allowed to have foreign currency, this facility from a sister Eastern bloc nation accepted only dollars. When I was there, the Peto Institute had kids from all around the world. Israel, England and I believe America. And it was very expensive. But at the time, it was the thing to try, the hyped method. Some people went to great lengths just to give their child a chance of improvement. Mine would go off working in some Western countries, not always officially, if you know what I mean. Because at the time this was too important to give up on. In return, the Institute never even gave them the courtesy of explaining the process and chase them off the floor every time they showed up. It's a simple as : if you don't fill inn the blanks for a parent, somebody else will. Unlike many people connected to the CE world I see its faults. And after 25 years a lot of it still isn't clear. As much as I support it, I prefer maintaining an outsider's position. I prefer looking in from the outside of a tent than defending it like a fortress under siege.

Monday, March 10, 2014

Is Conductive Education a scam?

When I was asked  to deliver keynotes at Conductive Education World Congress last Fall, my mother was surprised. She couldn't see how I could be perceived a success story of that rehabilitation method at all. From her perspective, after a few years we've given up on it. When it got too burdensome to work into a daily routine, too time consuming, too painful to lock my leg braces straight and I got too tall and too heavy. How can I be a success, if we quit it and it never got me the one thing my parents always wanted, the one thing that all of this was meant to lead to, the thing that would justify years of sacrifices, hard work, different approaches, costly therapies and a prolonged stay at a foreign institute: me walking. From my mother's perspective my years in Hungary were a failure. That's the funny thing: she knew the excises, she understood the routines. We even mixed and matched to make our own and adapt them to the conditions, tools and furniture in our apartment. She understood the mechanics of the method fairly well. But it was never properly explained to her what it did and why. But unlike some of the other parents who felt CE didn't deliver the results my parents had hoped for, we didn't blame the method- we blamed ourselves. Perhaps we weren't focused enough. Maybe we didn't put enough hours in the day into it. My father saw me as a slacker. He felt I wasn't ambitious enough, that I wasn't working hard enough and routinely he would try to scare me into what he felt was getting me to put 110% into it by telling me horror stories about how if I don't get my act  together, I'll end up in an institution, in a bed, with a hole under me to deal with my bodily functions. It's a pretty heavy thing to tell any eight year old and it gave me nightmares. But I also think it's what drove me to America to be independent. Recently Andrew Sutton cited a post from one of the disappointed parents who didn't get the result they expected and concluded the method is at fault and therefore it must be a scam. And I can relate to it somewhat. Nothing was ever explained to my parents either, and they were too, disappointed. But instead of blaming the center, they blamed themselves and me. If it doesn't work after all, there must be a reason for it. What my parents didn't see- was my increased mobility. My better balance. That I could get around more. That I could figure out how to transfer myself from a chair to a wheelchair, how to climb on to a bed, how to figure out where to push and where to pull to get on a toilet seat. For me- and I can only speak about my own experiences and what I think I benefited as everyone is different- it was something that greatly benefited my quality of life. And it allows me to function today. But my parents didn't know it. Because the Peto Institute never bothered to explain anything.  You were just expected to blindly follow a conductor, an authority figure, and trust that there's a reason for everything that happens on the floor. And I think Hungarian Conductors were spoiled by this uniquely highly regarded authority position they had in Budapest. They go to other countries, other places where they need to defend and explain their own method. They have to convince the parents. And I don't think they're prepared to do so. But guess what: we live in the age of information. It's very difficult to built a positive reputation and it's so easy to trash it. If the Institute in Hungary is not forthcoming with data and research somebody else will fill that void. When a few weeks ago I suggested that Conductors would benefit from having a support network and training I was practically told to mind my own business and go observe something else by some vocal commentators on Andrew Sutton's Facebook Page. It seems to me, that Conductors in Hungary got pretty used to a certain visibility of the method in Europe and the respect that they get. As someone who worked at a nonprofit that offered CE in America I have to stress that over here we struggled for every ounce of publicity and media attention. It was my impression, that as recent as 3 years ago it was seen as a novelty and a method that had a hard time distinguishing itself from therapies in an accessible, media friendly way. If you are  a Hungarian Conductor moving to America- to quote "Wizard of Oz": You're not in Kansas anymore. It was only last year that I sat down with my mom and I explained all the things CE gave to me. It only took her 25 years to understand. Is CE a scam? Not from my experience. But there's a lot of misinformation, very little to no research and explanation and a whole lot of attitude. I think some of it comes from Communist times, where a lot of relationships- be it doctor-patient, salesperson-customer, administrative worker- citizen where built around the disproportionate  difference in the position of the parties, when one has the power and the other has to endure. A recent quote compared a Conductive Education sessions to Hitlerjugend. Initially I laughed it off. But then it got me to think: maybe it's not as ridiculous, maybe us Europeans are just more likely to submit? After all Americans often challenge authority and often bring up their Constitutional Rights. Here's what I say about happens during those exercises. How is different from having a couch or a professional trainer? How do you  exercise if not through repetition?. Just an hour ago I saw an infomercial for a boot camp like fat burning exercise routine program on a DVD, where a marine like looking ripped and angry instructor inspires you to lose weight and only needs 35 minutes a day. And it's easier and certainly less boring to move through intelligently composed routines that involve speaking or singing. No, I don't think it's a scam. But I certainly think CE is failing the parents by not communicating, by structuring a dependency like relationship instead of dialogue. It's certainly failing its own legacy by thinking people will just come to it if it's there, by not defending it's image, by not being transparent, by not producing volumes and volumes of papers and books on the subject. Because if its supporters stay quiet, its opposition most certainly will not. I think it's fair to ask: What is my child likely to benefit from this. I think it's fair to ask to see some research, some case studies. CE was never cheap. My dad got a second job and when that wasn't enough we went working abroad. I think it's fair to ask and to question if you tie your family resources into this, often go abroad to give their child a better life (the Peto Institute only accepted dollars as a form of payment when I was there) and if you put your future, your hopes and dreams into the hands of a stranger.

Friday, March 7, 2014

Conductive Education: An offer turned down

I think I may have ruffed a few feathers. I was as polite and respectful as I could, it was not my intention to offend anybody, but when ACENA- the American association focused on Conductive Education offered me free membership in exchange for a speaking engagement I had to decline. I credit CE, a once-popular rehabilitation method for kids with Cerebral Palsy with making me as functional as I am today. And I stand by it. And I always said that I would proudly speak about my experiences growing up with the method. I just don't have much to do with it anymore. I'm sure organizations like ACENA are a power resource, for parents eager to help their children, CE practitioners-  the Conductors or other educators involved in the community. I'm neither- although I've been called a Conductive Education success story. Three years ago my response would have been different as I worked for the Jordan Klausner Foundation that run a Conductive Education Academy in Gainesville. Back then I had a vested interest in bringing as much attention to the method as we could, getting as much support and resources as we could in hopes of attracting parents and kids and showing them this a method they should consider. Perhaps it would have saved our school from closing. But as I have moved on, much of it is in the past. That said, I've always tried to make it clear that I would always be willing to do fundraising and speaking engagements for Cerebral Palsy and Conductive Education causes. And I'll always talk to ACENA members about pushing shared interests when and if they reach out to me. I'm an open book. I'm excited to do things for a living that allow me to impact people's lives- as I'm an open book and talking about what it was for me back then and what I think about it now gives me great joy and I love to travel.  I just don't feel I should join an organization of any sort to do that. Truth be told, I don't believe in joining something just for the sake of being a member. I only sign up for things I can be actively involved in. The thing with ACENA is, I'm not even sure what they do and how they do it and why would they want me amongst them. I'm sure that it is a wonderful institution and people that deal with CE on daily basis. I always feel bad about turning an offer down- because it comes from passionate people wanting to make positive change. I just feel that it's as practical as me offering a free American Bar  Association membership to a Conductor- it just would not be of much use to them. But then, on another level- I prefer to be neutral and maintain the ability to criticize from the outside looking in. I think that's what the CE world is lacking most. I also feel membership implies at the very least involvement if not- endorsement of what you're signing for. I wish them all the luck growing their organization. I just don't know how and why I'd fit in.    I'm at the stage in my life right now where I reevaluate my life goals, the type of career I want to have with who I want to do it with and how. If I ever end up working with a CP cause, which is an exciting thought- without a doubt I'd join as many associations that supports it, and  be as active in them as they let me.

Wednesday, March 5, 2014

Are we on a brink of a war?

The TOK FM journalist emailed me yesterday. My radio interview  (already edited to a 5 minute segment down from an hour long conversation due to poor quality of the Skype recording) was to be accompanied by a lengthy feature- but it's now delayed. The story would have popped up on the station's website, but also on the portal of its parent company- Gazeta.pl, which is the country's newspaper as well as most read online publication. The regular work of all media back home is upset by the events in Ukraine and everyone is watching and waiting what will happen next.  Poland is just across the boarder. Whatever happens over there is likely to spill over and affect  all of us.  I may be in America, but like so many people in Europe I'm scared for the future of my country and the order, growth and peace it took us decades to develop. I was privileged to grow up part of a generation that not only doesn't remember war, but also wasn't there to witness the country rising from ruins and going through years and years of reconstruction. My dad and his bother would play "war" under their living room table. Famously  he  told my uncle stories about their adventures on the front Even my older brother in the early 1970's used to draw Soviet tanks inspired by semi-propaganda TV shows about Polish-Russian war alliance and everlasting friendship. The 1990's saw the collapse of the Russian sphere of influence and we all were looking eagerly to the future. To the west. To growth and stability. That excitement I was lucky to be part of remember, while I was spared the fear and devastation of war. And my parents' hope that in the XXI century, despite the centuries of painful history of being sandwiched between Germany and Russia, if our military and economic ties in Europe are strong enough nothing bad can happen, because it would not be in anyone's interest to bring about turmoil. Poland has been actively pushing for Ukraine's drift towards UE and NATO and for a good reason. Unlike some of the other former members of the Eastern bloc we are not surrounded by friendly nations. Western Europe politically speaking ends at our Eastern boarder and that always is a cause for concern. The emotions were running high over the last few days and with the internet the world watched live as it happened. What will Merkel do? What will Obama say? I think whatever happens next it's good to remember that a war is never an impossibility regardless how we may be progressed, united and developed. Yes, I understand that Ukraine has a politically and historically complex structure- quite frankly not only with Russians but also with Poles. One of the great accomplishments of the post World War II Europe was settling of most if not all of major territory dispute. A lot of Polish media seems to be drawing comparisons between today and the late thirties. How the West gave in to Hitler hoping to appease him. Hoping he'd stop with what he got. And after Germany invaded, Russia did the same from the East a few weeks later. To protect our eastern territories from fascism no doubt.  After all, Poland at that time wasn't an ethnically uniform country either. And all while the West strongly protested and did nothing. Polish media are watching the events as they develop closely and for a good reason. Not only because those things are happening right next door. We have enjoyed the longest period of peace in Europe in modern history. While conflicts happen, they're usually limited and internal. But it also tests our new NATO and UE alliances and assurances. What will the West do? Obama, as loved he may be in America doesn't come across internationally as a firm, strong, determined leader. Europe, between its own leaders, interests and agendas has a hard time figuring itself out. So between the statements, demands and protests, most likely nothing will happen. And  Ukraine will unfortunately pay the price of the world's inability to do anything.

Monday, March 3, 2014

Fix it

A few days ago I received a package. My mom, between all the things she has on my mind right now dealing with my father's prolonged hospital stay remembered to send my replacement parts for my Swiss, custom built wheelchair. Now it will be up to me to find a place that will be able to put them in for me. Those who follow my writings may remember, that I got the chair as part of the settlement after a near death experience with a Gainesville city bus nine years ago. During my European visit last fall where I was speaking at a disability conference in Munich, my dad determined that my four wheels are no longer structurally safe. I get a good use out of it just riding around, and all the folding and unfolding on planes, car trunks and pick up trucks got it pretty banged up. A lot of the essential parts are now broken. The whole thing may collapse under  me at any time. We tried to fix it up a little bit for the time being when we were  in Europe. My father used a seat from an old hospital chair and screwed it to my frame. A shop in Warsaw replaced my front wheels and back tires and a few missing screws for the anti-tippers that drag on the ground, but they were running out of time for more severe repairs. My dad was always in charge of doing the tune ups to my chair. He wanted me to know in and outs of the construction as well, just like other people know how to care for their bikes, but I'm not mechanically inclined. I do know when I need help however and when to look for it. I know I rely on my wheelchair for... anything and whatever the stake, I must keep it in good repair. It may be something as small as hair, dirt and rust getting into my small front wheels. From time to time they need to be unscrewed and cleaned. If I don't maintain them in good condition, the front gives me a lot of resistance making it that much harder to wheel around. My Air-Lite model chair feels heavier all of the sudden than most of those bulky hospital units. When my parents came with me to America to get me settled in Gainesville, they thought it was essential for me to have a mechanic or a person to look over my chair. If something happens to it, I'm stranded. Often I compare my wheelchair to a fitting accessory, like sun glasses, just to show how comfortable I am with it and in it and hows I don't mind it at all. But in reality it's more like an essential body part. When I was waiting for my new wheelchair to arrive after the bus incident (and it took us 7 months to settle and get one) I was getting around in an aluminum chair I brought from Poland as a temporary mean of transportation, for emergencies. I guess it's true what they sau, nothing is more permanent than a temporary fix. That small chair was never intended to serve me as long as it did. Once I made a mistake of bringing it in to the bike shop on campus. They lifted it up to clean it and the grabbing clasp broke one of the aluminium bars. The chair kept sinking in and collapsing until I found a welder in town to fix it. At that point I realized that whoever I entrust my wheelchair to clean it or fix it, they need to know what they're doing and it's essential to my existence. Luckily, the Gainesville company that took the measurements and ordered the chair for me has been very good with any service calls I've had, from clearing my wheels to replacing the worn out axles or fixing the loosen wheels or re-aligning my brakes. The equipment in the box that I have yet to open will need to find its way on there and soon. One of the things that broke, through years of wear and tear, use and abuse is the bar that supports the sit and entire construction. I'm a little bit lower if you will and deeper in the sit, but so far nothing has fallen off. I fear that it may be just a matter of time.