Wednesday, October 30, 2013

Passing

"It's very rare to have an occasion like this, when something good happens in this courtroom, a moment to celebrate"- said Judge David Glant nearly three years ago as he put me under an oath and sworn me into the profession, officially ending my many years of struggle to become a lawyer and setting me on a new adventure. He didn't really like the vows that came with the paperwork, so he wrote his own. A series of questions I had to answer "I do" to, that I don't really remember, other that they ended with "So help you God". You could see he was really excited and happy to do this, something unusual and different from the criminal trials he was involved with. When I asked around I've heard that he was tough and fair, with some nicknaming him "father time". And you could tell he was a family man, a generous donor to the Klausner Foundation when I was still involved with it. As he married Jordan Klausner's mother he became a part of my story as well. And because of him, rather than doing it in front of a notary public at a gas station or in a crowd of people at a courthouse in Tallahassee I got to take my oath in a real courtroom in front of a seasoned judge with my friends to applaud no one else but me. My own special day and he was not only simply there, he made it happen. And you can see how I think of that moment as defining in shaping who I am today and a symbol of a point when things seemed to turned around for me.
 My picture with him was the header for my blog for the longest time and now it takes up an entire page in my book  "I look forward to see you practicing in this courthouse"- he said- "We are very wheelchair friendly and we have a modern building". Of course that never happened as I never set foot in a criminal courthouse again and - for the record- the carpets and my wheels don't really work together however modern the building may had been. But it was my honor to have Judge Glant as part of that milestone. As I returned to Gainesville from Munich my Blackberry picked up a message from my local Bar association that funeral services will take place Wednesday, the 30th at 11am. He was 63, my father's age. It made me think, yet again about how life comes at you fast. My condolences go to his wife, the entire Klausner-Glant family, and everyone who had a privilege to know him and work with him

Monday, October 28, 2013

How my Skype account was stolen

Between a wheelchair that was falling apart, a keynote address in Munich I was worried about and an onset of flu, one other thing made my European adventure even more action-packed. Two days before I boarded the plane to Germany I noticed that my Skype password stopped working. Looking through my mailbox provided a quick answer- someone with a Russian email account transferred my screen name away from me. The only thing I got was an email notification, one that I disregarded as spam, because I don't read or understand Russian. The system did not ask me to confirm it, just informed that it was done, with no way to undo it or inform the administrator that it was not my intent.  The login was one thing, I could have easily gotten another, but Skype tends to store recent payment information with the account. I looked with horror as my American Express card continued to get charged for more Skype services day after day and there was nothing I could do to stop it. I could not log in and have the card removed as the thief changed the password. He kept buying and buying and buying some 75 dollars worth of service as I watched. Luckily, American Express is very good at addressing privacy concerns (mostly because it doesn't have a preset spending limit) , so the first thing we did is had it stopped from any further transactions with Skype. Then I disputed charges that have already posted and again, hats off to AmEX for making it as simple as easy as possible. Mind you, I was calling from Poland and from my mother's Skype account. Getting my own back was a more complicated story and I feared I would never happened. Considered this: I had the screenname rstrzal for about nine years attached to my university's email. And here I am having to prove to Skype that I'm more entitled to getting it back than someone who stole it only a week ago. After a transfer that, again, nobody asked me to confirm, verify or click anywhere. Yes, I suppose I should have had a longer password. But then after a decade of having no problems you really don't think anything bad will ever happen. Getting it back caused a lot of problems. As I've had it for so many years I wasn't really sure which email I exactly registered it with, although I had three contenders, what month and year it was, if I was in Poland or US at the time. I remembered few of the latest phonecalls that I made, but I use it almost exclusively to call phones, not screen names. Outside of my mother's and brother's I struggled to remember any of the contacts on my list, since I mostly added them years ago and never contacted them again.  Luckily my Microsoft password was linked with Skype and I was able to access my lists that way. While in Munich I even started a new account- Lawyeronwheels- thinking, well, maybe it's time to embrace this new identity I have created for myself. All this to transfer my screenname back to that same email someone stole it away from after only a week. Doesn't seem like nine years and even days should be on equal footing. I've initiated chats with Skype agents four times before all the information finally matched their records, but finally it worked. Most funds used up and contacts deleted. The internet in my hotel was patchy, my Blackberry refused to work with it completely and I was staying up with a chat agent the night before my big speech finally getting it to work. And I was worried about my financial information. I had to phoneplan active on my American cell back in Europe, so I needed it for emergencies. Like call my parents as I'm boarding a flight to Warsaw so they know I'll be an hour late. I needed Skype to contact people back in America and I rely on it a little too much. But it made me think how our credit card information is never safe. And I'm surprised how Skype doesn't have better procedures to cut the payment forms off unless I give them information like what month I registered my account in 2004. But then  it feels that giving our information anywhere always puts us at risk. I ca,e home to a notice from Adobe that my data have been stolen from there as well. As far as they know  the thief may have gotten their hands on a way to decrypt credit card information as well and they are putting me in contact with some identity theft monitoring agency. It wasn't my fault, yet it still happened. Seems like there's no way to be safe online even if you do everything right. There's just too much sensitive information floating about us on the internet for me to sleep well at night. How do you feel?

Thursday, October 24, 2013

"Would you ever go back to Poland?"

Every time I see my family again I fall to pieces. It dawns on me how much I miss them. How much I'm not there. How they live their lives in Poland while I live mine so far from home and all we have are those glimpses, those moments when we connect and get sense of who we are once every few years. How time passes, things happen and change and those instances are all that we get. And that's when getting back to my reality, the life as I know and built for myself gets really hard for me. It's when I'm back with my parents that I ask myself how do I ever go on without my family around me? But then I have friends and hobbies and responsibilities. Places to see and commitments. Fun evenings and work to do. Causes I believe in and passion in what I do- life goes on. There are times that I get really sentimental about my journey, but that passes with realization how much more I get to be me in the place that I am and how much  better my life is now that I ever imagined in Poland. During the ten days I spent in Warsaw this month my dad asked me if I ever think about going back. As he did my wheelchair fell into a crack in the sidewalk. And I had to say: As much as I miss the people I don't miss the place. The temporary wheelchair we took out of the basement for the time that my regular one was in repair, big, bulky, heavy- became a perfect illustration  and a metaphor for my life in Poland. I couldn't move it by myself, I had to be pushed. And the moment I sat in it I felt powerless, with my energy drained, and at everybody else's mercy. Accessibility isn't and never was a priority in Warsaw. We waited some 45 minutes in the cold for a street car without steps, letting three that came before go. Everywhere I went I saw cracks, stairs, steps and high thresholds. I guess I could make it here if I had a permanent assistance getting around, but why should I compromise on my quality of life. My brother and sister in law wanted to take me to a nice, high end restaurant. Three steps lead to the door, luckily the greeter was there to help carry me grabbing the side of my wheelchair. I also wanted to see a play- we had go through the backstage because there were fewer steps if we went around the building. Needless to say I would never be able to do it by myself. I would like nothing more than to be able to experience Warsaw through the eyes of my brother and father. Restaurants, cafes, shops, cinemas, I hear it's an amazing city. They speak of it with such fondness. But for me Warsaw meant home, school, an occasional trip to a shopping gallery, but mostly nights in front of TV. I don't have my places there, venues I remember, think about and miss. I don't connect to Warsaw on a personal level because it never was welcoming and accepting to me. I have more places that I do miss, that feel like my own in Gainesville. And I realized how much life in Poland taught me to expect less. To dream smaller. To mold who I am, what I want and what I do to the wheelchair unfriendly reality around me. In Poland accessibility is a nice surprise. In Gainesville it's something I expect.

Wednesday, October 23, 2013

Mildew

Here's one of my biggest faults. I really don't like to clean. I could say I'm not that mobile, it's hard for me to get into all those areas or that it takes me a long time, but first and foremost- I really don't like it. I only get to it when there's something much more pressing and boring for me to do. But I do like having a clean apartment. That's why  have somebody who comes in and does it for me and I do a pretty good job maintaining the apartment between appointments. Restoring it a reasonable condition was something I was looking forward to ever since I returned from Munich, so when my cleaning lady fina lly came on Monday I was really excited. It was also a good excuse to take care of my luggage and clothing I brought in that had no business being in my living room. I may me that lazy but I like being able to just leave the house for a few hours and come back to a world that smells fresh, looks clean and organized. This time however the cleaner made a very unwelcome discovery. When she moved the dresser, she found that the carpet behind is covered in mildew. Black and brown smelly substance that you can scrape with your finger if you wanted to. Any piece of furniture that was standing on the carpet had it too as well as severe signs of water damage. Bottom drawers ruined. Boxes I had standing in that corner- still soaked - with things inside now useless, we had to throw out. Shelves that were resting against the wall waiting for us to hang them- wet and stained as well. The bottom layer of the carpet acting like a sponge and the water coming up to the middle section of the room. I only left two weeks ago and although it is harder for me to inspect every corner, the moldy drawers I would have seen. I was only gone two weeks, my bedroom has significant damage with no visible signs of a leak. I've had flooding in my apartment before, but it was typically in living area by the kitchen or bathroom either from a leaky toilet or dishwasher with water coming towards the carpet. This was my bedroom's corner by the window. I had no idea if a leak was still going on, as everything still felt wet. The emergency after hours maintenance service for my community determined that the water was soaked in from the outside, through the cement, as the grounds around the outside of my air conditioning united shifted. The regular staff that came in the next day decided that the water leaks into the wall by an opening near the window or the roof. For the last two days I've had fans and dehumidifiers in my room running 24/7, so I've been sleeping in my living room. Today I demanded that if they are so determined to have that carpet saved it needs to steam cleaned. So, with everything in the middle of the room my apartment yet again feels like a construction area. This is something that had to had been going on for a while with water collecting over time. . Now I know where the musty smell and feel of this place is coming from. I used to think it's simply an old apartment, but now I know why I've been plagued by allergies and cough every time I  was home longer. A perfect epilogue to my European adventure..

Monday, October 21, 2013

WCCE8: One day short

I didn't get to see Munich at all. Everywhere I went during this crazy European adventure felt I was running out of time. Putting things together at the last minute. Praying no big emergency would come up, blowing all that I planned for up in my face. It started even before I got there. I have just settled a case the day before my flight to Warsaw. As I was exchanging emails with the other attorney I was throwing things into my bag. And I said to myself: How I wish I had one more day before I go to make sure everything was all right.  And then, flights always stress me out so I decided to stay up instead of napping. Luckily my friends picked me up in the morning. Although last minute packing always leaves me in a state of panic and I left my apartment in quite a bit of a mess trying to figure out what and what not to take I decided to worry about it when I get back. The ten days with my family went by quickly. And then I thought how I wish I could spend just one more day with them without trying to figure out where in Munich to sleep on the nights congress organizers did not provide me a hotel. Then I realized I was again running out of time. Coordinating a press release from Warsaw with a girl in California on my mother's computer. On Friday afternoon I got a phone call from a journalist for a last minute interview on Monday. Absolutely not- my mother said as I was to fly to Munich on Tuesday morning but she had very little to say in the matter. I wish everything wasn't as hectic, I wish it didn't feel so last minute. For seven days my wheelchair was in repair, most of my Warsaw stay. Every day we called the shop to see if it was ready and until the day before the flight we were not even sure in what condition I'd be going to Germany. The true extent of damage would only reveal itself when we got there. And there were problems we didn't even see. With a fever, a loss of voice and just falling asleep everytime I got to lean on anything I thought to myself how I wish I had a day or two in Warsaw, without stress, without rushing, just to get better. And I was still dozing off on my uncle's couch two days before my speech. At the airport it appears we lost a sideguard- a part of my wheelchair that was never recovered. More time lost trying to find it. The World Congress appeared to be happening somewhere between all the problems I've been having. Fixing my wheelchair, packing for America and trying to get better. Then we discovered that my sit is falling off the titanium frame it was bolted to and it is now collapsing and has holes. The fabric torn, the bolt ripping away from metal and coming lose. The bar that secures the construction- broken. Things the guy in Warsaw didn't see. My entire wheelchair was falling apart, 2 days before my trip home. It wasn't safe for me to sit in, we needed a fix and fast. He had ten days to figure it out, four of which my chair was just sitting in his shop doing nothing, while I was in some hospital loaner. But where do we go?  If you know anything about Germany you'd understand that hardly anyone works late Friday afternoon. Although we were able to track down the representative for my brand of wheelchair, Kueschall, he already decided to have himself an early weekend. While we were able to get me a quick substitute chair in Germany we needed to figure out a way to ship me back safely. On Friday afternoon my dad was able to switch out my sit with one from an old hospital wheelchair we found. He spent a few hours just poking holes in the upholstery to make it fit my frame and at the same time, seeing his struggles we were worried he'll have another heart attack. Between congress events, my dad was tweaking my chair to see what worked. I showed up at the presentation of my book with the sit at such bizarre angle that my knees were almost as high as my forehead. -If only I had one more day- said a guy from the shop in Warsaw returning the chair that had much more problems than he had fixed. And he had it for most of my time in Poland. I wish we had one more day to see how it all holds together- said my dad, Friday night screwing things together in my hotel room. If only we got to see Munich. If only we had gone somewhere. That  Saturday night I was back at a hostel trying to pick up Wi-Fi in the doorway to answer the other attorney. A few days ago I was answering questions the journalist from the Alligator sent in that same fashion. Somewhere between all the craziness we managed to fix my chair. The story got published. I gave my speech. I packed for home. I caught a flight. Somehow we made it. But a day would make such a difference.

Friday, October 18, 2013

My determination

"What do you plan to accomplish?"- a journalist from the Polish disability magazine "Integracja" asked me the day before I boarded a plane to Munich where I was asked to deliver a keynote address at the World Congress on Conductive Education. "I have a debt to repay"- I said, but that was only part of the story. The 2 hour sit-down interview almost didn't happen.  Just the night before I was rushed to the emergency room with a 38.4 C fever. On Monday I was on day two on my three day antibiotic regimen. Hearing that I had to speak on Saturday, the doctor prescribed something that she described as pretty strong, but she had also warned me that it may not work and I'd have to get sick days. But the Congress, the event that happens every few years was not something I could easily get sick leave from. These people flew me from Europe because they wanted to hear what I had to say. Most likely they'd be understanding if I really couldn't deliver but  I after all that it took to get me over there I didn't want to be the one to disappoint them, so close to the finish line. On Sunday night my mother looked at me like I was a crazy person when I refused to cancel the interview. I felt this was something I had to do at all cost, to afford the Congress every ounce of publicity that I could. It was my understanding that they had not been extremely proactive with the media and they were not exactly coming up with creative ways to use me for their PR either- which I would have been more than happy to do. So, there I was Monday afternoon, falling asleep as I was getting dressed, having no speaking voice, just trying to get through the day. My regular wheelchair was in repair and we were hoping it'd be done by Tuesday- which it wasn't and most of my time in Munich was spent trying to fix it up rather than exploring. I met the journalist in a 20-year old hospital style wheelchair with flat tires I could barely navigate on my own. I could barely speak and my drugs where in my manpurse. It was then than I thought, perhaps I'm overextending myself and biting more than I could chew. What am I doing forcing myself like this with my throat on fire and an obvious ear infection? Even the next day after I landed in Munich I was in no condition to interact with people. My uncle offered that I take a nap. I was out like a light and didn't feel much better after it either. One thought- just get through Saturday. And I did. But it did make me wonder, am I that determined or simply that stubborn. Is there a difference and if so- w hat is this thing driving me?

Wednesday, October 16, 2013

The Peto problem.

Some 25 years ago Conductive Education was what at least seemed like the leading approach to Cerebral Palsy. Parents from all over the world would rush behind the iron curtain to the Peto Institute in Budapest to give their kids a fighting chance. I don't think the method ever particularly caught on in the United States. But everywhere else it felt like everyone has heard about it and anybody wanted to try it, often sparing no expense to get to the centre. I guess an ounce of hope is more valuable than gold. But something happened to the Peto Institute over the last two decades. Something I don't yet fully comprehend. It seemed that somewhere between the high point of it's popularity and today it has lost all its glory. I understand why Americans don't know what this method is. But imagine my surprise when I sat down with a journalist from the Polish leading disability magazine Integracja, talking about my life and my then upcoming keynote address at the Munich congress, to discover she hasn't heard about it either. When I said "It was really big in the 1980's", she laughed. Then I realized. The 80's was a really long  time ago. I might just as well have been asking if she remembers World War II. She was to young to know anything about the Peto hype and the Institute seems to be doing very little to remind people that it still exists. It needs to reach out to people. It needs to put together a strong image, a message of hope that says "We have this method, decades of experience, it really works and it can really help your child". The problem is, the Peto Institute never needed to reach out to parents. Parents always came to it. But times change. And if you don't evolve, you stay behind. They need a strong and aggressive PR. I wanted to say the Institute needs to think of itself as a product, but it has always been a product. It was the only enterprise in the Eastern bloc I can think of where you needed dollars for the very expensive stay regardless of which side of the iron curtain you came from. Back in the 1980's it was a money making machine, while in most eastern states it was illegal to have any amounts of foreign  currency. And I guess, decades later the center could not keep up with how the market and the world worked. We now want information. We want proof, we want research. In the age of the internet we want to be able to compare things side by side. The Peto Institute was used to parents turning to it quite blindly. Not only coming to it first, but asking very few questions. And then the Institute provided very little understanding about what they were doing. At the World Congress on Conductive Education it started making a little more sense. One of the presenters said that it was Peto himself that was protective about his method and told his Conductors to keep it a secret. That way all you can copy are if you will the external features, if you will. The furniture. The exercise routines. But none of the ideology. None of the theory. And the secrecy continued throughout the decades. When I was there in the 1980's my parents were never allowed to take any pictures. They saw some of the exercises, but never were disclosed the reason and theory behind them. The Peto Institute felt it can gamble by keeping the most to themselves and yet keeping people intrigued and interested enough to keep coming back. And it lost. With new methods, new concepts, new research coming to prominence in the  information age you have to reach your client. You need to sell your product. And as much as you can you have to be transparent. The Institute seems to be sitting on decades and decades of success stories and experience. Where are the publications? The case studies? The research? The comparison of data over time? It seems  that all of the Conductive Education publications appear having no connection to the Institute itself. It's a number of often prominent, passionate private people who dedicate their time and put things together often in a semi-amateur fashion wanting to keep the legacy alive. And where is the Institute in this? Shouldn't it want to save itself the most? Shouldn't it be doing all the ground work. Setting up congresses, commissioning research, publishing in a multitude of languages, bringing back success stories for talks, tracking down former pupils. The only, yet limited push that I see always seems to be on Peto the man that made it all come together, not Peto the method. The question is: if everything that happens in the world of Conductive Education takes place with minimal if any involvement from the Institute, can it be saved against its will? When will it start to be a lot more proactive on the PR front to stop itself from falling into oblivion. This requires time. And planning. And money. You can't simply have a press conference these days and expect people to not only come but care about it. We're bombarded with information. Every day you're competing with news stories about anything from Kim Kardashian's undergarments to terror attempts in Kenya. Whatever you do it needs to be thought out and continuous.  There was a World Congress on Conductive Education. Sadly the world didn't seem to care. The most mentions that I saw of the event was in relation to my key note address. But this is because my own foundation, FDAAF, felt it was important to get the word out. So, we've written out a press release in accordance with the Associate Press stylebook and then we paid to have it distributed. Many outlets got it. Few picked it up- Conductive Education isn't exactly a hot topic. But the Peto Institute isn't doing itself any favors by voluntarily eliminating itself from the media.

Monday, October 14, 2013

Speech.

Consider this. On Saturday morning an audience gathered in a lecture hall near Munich to hear me speak about my life with Cerebral Palsy, my take on what I benefited from years of rehabilitation and how I became independent. You'd think that after inviting me as a keynote speaker and days of presentations on disability inclusion and integration they would find a way to get me up on the stage. When you're up on the podium you lecture, you're the speaker. The attention is on you-Norman Perrin said- and it's hard not to agree with him. When you're sitting next to the stage, you're just a guy on the floor- speaking. I didn't really mind, but I think it's a bit ironic and serves as a bit of a commentary on the state of things. You invite a man in the wheelchair to speak, you have months to prepare and when he is there to deliver, you don't know what to do with him. At the last minute they bring a table. They want to give me a microphone to hold, but I prefer to not have things in my hand. They finally get me some kind of mic stand and I was able to present. And boy did I deliver. This may be the least modest thing I have written in months, but I think I did a got job. After watching people for few days doing nothing but hiding behind their  power point presentations and reading from them I wanted to do something different. And I guess what I was about to do would have been different either way. My talk was about my life. My parents and what they have sacrificed their health to help me improve. My drive to independence. How we insisted to have me attend a "normal" school in 1980's communist Poland. How Conductive Education gave me a better understanding of my body and balance and some 25 years later I still manage in places like unfamiliar airport bathroom in Frankfurt. What the Hungarian experience was like. How I felt being in the Peto Institute. The first night there. My first consultation before I was admitted. How loving and encouraging the Conductors were, some of the things I remember. I didn't write out or memorize a speech. My Trial Practice instructor, Carl Schwait, would have killed me had I done so. Never read when you present he would say. But learn to transition between your points with an ease. Learn to talk about it. Be familiar with your material. Of course there is a difference between presenting in court a delivering a lecture to a group of people and there is a difference between talking about a case and some deeply personal experiences. But I felt good doing it. And I was running out of time, but I could go on and on. Some people have asked me if they could see the written version of what I've done in there, but it doesn't exist. All I have is my conspectus.  And the whole thing was of course recorded. After the talk, a woman from a CE center in Chicago approached me to see if I'd be interested in perhaps doing a fundraiser event with them. And I have always said I'd always be willing to do things like that, just point me in the right  direction. I also need to thank Susie Mallet and Andrew Sutton for insisting I was included in this and making me a part of the world. But I want to do more and more- just keep coming up with ideas.

Friday, October 11, 2013

Doom and gloom

This is the second day of the  Conductive Education World Congress and the second day of listening to some odd statements about my own disability. Yesterday a man presented his research part of which dealt with how adults with CP assess their own quality of life and how they enjoy it. "This data shows, that you don't have go to a university, you can have CP to still find joy in life". I could say of course, that I do have CP and not necessarily the mild form of it, but I did go to a university and
I have three law degrees. I'd say my self esteem and perspectives where only enhanced by it.  The problem I saw in a lot of those presentations is that nobody really expected the people with disabilities to accomplish much and amount to anything. As if the only goal of the rehabilitation process and the most you can get out of an individual like me is getting them some degree of functionality and have them  enter the workforce on some lower level to be productive. A woman from the UK presented some alarming statistics that the younger generation of CP children is less educated and requires more severe care than kids in similar studies a decade before. And it really got me wondering. To what extent is this lack of drive towards education a product of a particular child's actual inability to learn and absorb knowledge and to what is it caused by all the factors external from child's intelligence. Their own mobility and spasticity, but also transportation, accessibility, stairs, lack of lifts, logistics. I have always said that I was able to go to school because my parents were lucky enough  to get an apartment with no stairs leading up to the elevator,  in a building with a lift and on a relatively low floor. This may sound funny, but not all parents of CP children where that lucky. And if you think about all the struggle you'd have to go through just to get them out of the house every day, you'd lose passion to educate them as well. And this before we even get to school, before anything remotely related to their individual learning ability even has a chance to manifest itself. Before I moved to America, I had to accept those architectural barriers as my reality. This was my world. Things blocking me had nothing to do with how smart and driven I was and my career perspectives had less to do with my knowledge and talents and more with how someone designed a city around me to exclude me at every junction. And you think, this is life. You have to conform somehow to those barriers around you and find the things you can do. We chose my highschool on the basis of proximity, not my interests in math and physics. My father suggested I go into computing so my brother can help me along, get me a job, so I can be in that way productive. 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.

Sunday, October 6, 2013

Sick, sick, sick

On Saturday I'm supposed to give a short presentation on my life story as it intertwines with Cerebral Palsy rehabilitation. My flight to Munich is all set. The problem is, I physically can't speak. My throat hurts when I try to swallow, my neck is in pain with every slightest move, my ear is irritated and as of six hours ago I'm on antibiotics and a bunch of colorful pills I can't name. Are you familiar with Murphy's law- if anything can go wrong it will? Welcome to my life. What was supposed to be the high point of my Warsaw visit- a celebratory dinner hosted in by honor by my brother and his wife with her world famous chocolate cake and cousins I grew up with, that I last saw maybe six, maybe nine years ago ended up with  a trip to ER and figuring out which Warsaw clinics are open Sunday. As I started to zone out right at the table my sister in law took my temperature to discover I had a high fever. Tomorrow morning I was supposed to make my mark as I was asked to give an interview for the Polish disability magazine "Integracja". I'm flying to Munich the day after. The germs- an unwanted gift from my mother- what she claimed was a slight sinus infection, but what with all the coughing and clearing throat sounds more like an asthma attack that she refuses to see the doctor for. But I did and guess what- I have some upper respiratory tract infection. As I was waiting with my father to see the doctor I rushed to use the restroom. It wasn't wheelchair friendly, it barely had a toilet seat attached and I had to use my father arms to lean on because there was nothing else I could safely hold on to. It's been decades since my father had to help me go potty. On the upside- at least healthcare in Poland is free. So far I'm sleeping, eating, sleeping, drinking fluids, sleeping and taking drugs. Six hours later I seem to be in a little bit less pain. Keep your fingers crossed.

Friday, October 4, 2013

Welcome to Europe.

On Saturday I'll be giving a twenty minute lecture on my life with Cerebral Palsy and how all the years in Hungary have helped me become more independent. The congress organizers have decided to sponsor three nights at a hotel, a bit odd considering I'm traveling from across the pond, the congress is three days exactly and I was asked to be there for all of it. That's part of the reason I've decided to go to Poland for a week (other than I haven't seen my family in years) - I feared I wouldn't be able to pull it off, and the idea is a bit ill-conceived. The conference starts Thursday and I'm arriving in Munich Tuesday. Sounds simple enough, right? I'm even bringing my parents to help me.... Wrong. Finding a wheelchair accessible hotel in Munich or anywhere close is a nightmare. A perfect commentary to anything disability related. Welcome  to Europe, you're not wanted here. There are stairs everywhere, there are lifts nowhere. Of course you can find some really expensive high end places for hundreds of euros a night, but I'm not prepared to make such significant personal investment into something I'm doing for others, something I was asked to do as a guest. We were planning to stay with my uncle in Munich, that's why we decided to fly there Tuesday and not the day after. A week ago he seemed excited to see us, but now it seems that something may have happened. We now can't reach him. We don't know where to go, what happened and if he's expecting us. The last two days were spent calling hotels, hostels, bed and breakfasts and agencies and in most places asking about wheelchair access felt like requesting door knobs made of gold. The whole trip feels like everything is falling apart, as every plan and every contingency falls through. Even the suits that my parents wanted me to wear proudly in Munich, waiting for me  in Warsaw, don't fit me anymore. A lot of stress, very little information, and that's just the first step. I'm ready to be done with this already

Thursday, October 3, 2013

The Press release

Wheelchair-bound attorney Rafal Strzalkowski, who lives with cerebral palsy, will be a keynote speaker at the 8th World Congress on Conductive Education following the launch of his accessibility awareness nonprofit.
On Oct. 12 in Munich, Strzalkowski will speak about the importance of growing up with Conductive Education, an integrative education and therapy system for people with disorders of the central nervous system. Similar to the goal of the Conductive Education school in which he was raised, the Polish-born lawyer hopes to help disabled people become as independent as possible through the Florida Disability Access and Awareness Foundation.
“Being in a wheelchair myself, I’ve realized that people with disabilities are not really aware of the rights that they have,” said Strzalkowski, president of the FDAAF, which was registered as Florida nonprofit on Jan. 17. “I believe that information is key, so the more information you have – including knowing about your surroundings and how to get around by yourself – the better you will be.”
Because he grew up in Poland, Strzalkowski was able to attend the nearby Petö Institute for Conductive Education. Founded by Hungarian physician and educationalist András Petö, Conductive Education incorporates students’ development and personality characteristics to create a complex system of education and therapy. Through the FDAAF, Strzalkowski hopes to connect schools and businesses that encourage physical and emotional progress in disabled people.
“I’m educated and accessibility issues affect me today,” Strzalkowski said. “I know there are a lot of people who would benefit from better resources.”
In order to create an organization that serves the Florida’s disability community, which lacks information about legal rights and sidewalk accessibility, the FDAAF board of directors includes an architect, a businessman, a disability services provider and software developers, Strzalkowski said. Board member Paul Brophy is a business owner in Gainesville who has experience accommodating people with disabilities in his former restaurants, The Shamrock and Brophy’s Irish Pub.
“People don’t realize that a lot of places – a lot of businesses, like restaurants, bars and clubs – do not have any facilities for handicapped people,” Brophy said. “Their staff don’t even know how to handle it, they don’t know where to seat them. And a lot of people who are in wheelchairs don’t know that there are businesses and restaurants that they can go to.”
The short-term goals of FDAAF include providing links and through its website and organizing outreach to the local Gainesville community. The board is also working on developing a mobile app that provides information about which areas and businesses are wheelchair accessible in Gainesville.
“I want to set up a structure of people to be in charge of going block by block to evaluate their surroundings, actually assessing sidewalk ramps and continuity,” Strzalkowski said. “These are very important factors for wheelchair-bound people.”
The board expects to launch the app by the end of the 2013. Information about the FDAAF and its initiatives may be found at http://www.fdaaf.org.
In addition to sharing experiences about growing up with Conductive Education at the conference, Strzalkowski will present excerpts from his new book, “Never, never quit,” which chronicles experiences from his blog about overcoming disabilities, http://blog.lawyeronwheels.org/.
For more information about the 8th World Congress on Conductive Education, please visit http://www.ce-worldcongress2013.org/default_en.asp.
Writer: Danielle Torrent   
Sources: Rafal Strzalkowski, +48 789202594
rs(at)lawyeronwheels(dot)org
Media Contact: Paul Brophy, 703-819-7733
paulbrophy(at)fdaaf(dot)org