I wanted to wear tennis shoes as a child, yet I couldn't. Everyone around me got to show off their latest Nike, Puma or Adidas models, while I was stuck with orthopedic footwear. I knew why, of course- the hard leather kept my feet from twisting to the side while the firm shoe went above the ankle. Still, they were ugly. They were made from an outline of my feet, to tailor my individual needs. They were practical and they were the right choice, but they were not pretty. I don't know what they do now, but back then they only came in one design, with one color to choose for the entire shoe and laces that were a pain to tie. I kept going back to that place perhaps twice a year hoping that as I grew older I'd get more variety but that never happened. My shoes always look the same. If you ever watched classic films about nuns or old spinsters this is what I had to wear every day. And I was 7, 8, 9, 10 at the time. I was a child wearing an old person's shoes. It was difficult enough having a disability without sticking out in every other way. You can think, a shoe is just a shoe. But that was the way they approached every disability assisting device at the time. Big and bulk and heavy. And dark, depressingly dark. If it was practical apparently it didn't need to be pretty. It was always one or the other it seemed and there was never any attempt to make those things colorful or fun, kid friendly. If only I could have stripes on the shoe, or Velcro to break the ugly monotony of the brown or grey shoe. It almost felt like I was being punished. I never quite understood why a disability needs to be such a serious and sad matter, so basic, stripped down and generic. Between my shoes, wheelchairs, sticks and braces I was the one ultimately stuck with those things, the one who had to wear and use those things and one other thing I didn't really need was a constant reminder of my disability. And as soon as I started my early to mid teens I wanted to be stylish as much as I could. I wanted to look nice, I wanted to wear nice things. I wanted to be trendy and fashionable, and yes the shoes had to go. I didn't care that my feet were not aligned straight, I wasn't walking that much anymore at the time. And yes, if I stand, my feet turn inwards. I probably stretched out and destroyed plenty of pairs over the years , and my flat feet clearly didn't help, but I felt better about myself. My feet still turn to the inside, even as I sit and I know you can undergo a procedure now that will limit how the leg moves from side to side at the ankle but it's not a big deal. Know this- if you think that a child is not impressed by the big orthopedic devices or doesn't want to wear or do what other kids are, just because it may be the right thing- you're wrong. Aesthetics is important, even if not practical. Why else would people replace their black tooth fillings with the white onces, get veneers or whiten their teeth. It's easy for kids to feel like they don't belong, others may be cruel about it as well, why add to their problems?Should I have not wanted nice things because I have a disability? If Gucci can design eyeglasses, why can't they design orthopedic shoes? My first experience with a wheelchair was with one of those big and scary hospital things. Back then I thought that's all you can expect. My chair now is light and bright yellow. It not only takes me places, I'm making a statement. Of course the issue is not shoes. Or wheelchairs. It's the feeling I grew up with that I should expect less because I have a disability. That I can't like things that are modern, smooth and sleek. So you'd just settle for ugly. What is the justification for all that ugliness and what does it do to your self image and psyche?
Monday, December 24, 2012
A few years ago my law school colleague Bethany Stevens, a fellow wheelchair user, shared with me her idea of writing a book about the sexual needs and experiences of people with disabilities. Some time later I found that her passion for the subject inspired her to go to California and pursue an advanced degree in the field. Being a private individual that I am, I've decided not to discuss the intimate details of my life, which coincided with my profession and desire to put out a respectable image out there. My primary concern was to be taken seriously- but that doesn't mean that I don't think the topic is of great importance. Neither it is particularly fresh and ground breaking. Still, I have great respect for people who go in to dispel the myths and misconceptions about what having a disability is like. And that involves every aspect of being human. While I don't believe in oversharing, what I want to share with you are my experiences and impressions after seeing the movie "Sessions", that is still playing this week at Gainesville's Hippodrome, the local arthouse cinema. Every Wednesday I go in to be surprised by whatever independent, documentary or foreign feature is playing. I never investigate or care to check in advance what it is. "Sessions" is a film that you should see if you get the chance not only because what is happening on screen may broaden the scope in which you think about disabilities but also in the context of viewer feedback that pops up on the internet. Many people were not prepared to see what they saw on the screen. They were obviously surprised to watch some one with severe physical limitations presented as a sexual being. Many were uncomfortable. I've seen the word "gross" used to describe one of the most natural human behavior. What the movie is actually showing us is one thing. But the reactions to it bring up a different set of issues and speak volumes about our society.
Based on a true true story, the film is centered around Mark O'Brien, a middle aged, bed-ridden poet paralyzed after childhood polio. He spends most of the hours of the day in an iron lung and only has movement and control from the neck up. Raised catholic he has dreams like many others- To do it the proper way, propose to a girl and form a relationship. When he realizes that it's not a likely scenario a sex therapist suggests he enlists services of a sex surrogate- a professional trained to use sex as a tool to help a client work through his problems and limitations. "Sessions" as they are only to meet six times, to give him the experiences that he never had before. This is not a fairy tale. And the film, although not too graphic doesn't shy away from presenting sex as a very technical endeavor . But it does so much more. It presents it as a very human experience. Something we grow up being ashamed of, yet common to all of us. People with different levels and types of disability all share the need for intimacy- to be touched, to be desired and wanted. To express themselves physically, because it's a form of expression just like any other. Yet, it seems the less mobile people are the more the public refuses them the right to have those feelings. The wants and desires. The society is more willing to see people with disabilities as great survivors, champions of life, winners with great spirit, so much so that it's uncomfortable seeing them as physical beings. But if there's one thing that the movie really makes us think about is how much sex is not simply an act that people do. It's connected to all those other aspects of our life. Our self image, our body awareness, our fears and limitations. The progress of the main character comes from outgrowing his own mental barriers and accepting his physicality. Helenn Hunt does a wonderful job playing a sex expert slowly working through Mark's issues with himself- that have as much to do with his condition and his relligion- to give him more confidence, awareness and understanding of himself.
Honest and open, with nudity that is not intended to arouse or is airbrushed t is also very humane in treating people with disabilities as multi faceted and complex. Yet, there's been a lot of complaints about the lead's age and appearance. Odd when you think it was a true story. Some were uncomfortable to see the sex surrogate in the form of an aging mother performing these acts on a skinny man only able to move his head. It really got me thinking. What has happened to us as a society. So she wasn't Julia Roberts in her 20's and he wasn't Richard Gere. Has the main stream media really conditioned us into believing that only the young and attractive are entitled to have sex? Don't we ever look in the mirror? What is this obsession with being young and pretty? Are we only able to accept things attractive to look at? There's more to beauty than firm skin and fit shape
Friday, December 21, 2012
I never quite thought about it, but the only times I was outdoors during my years in Hungary when my parents took me home for the weekends [or, in later years for the night]. We practically never left the building. I remember two instances we went on a trip. One was to the Planetarium, the other to see Disney's Pinocchio at the cinema. Those were such unique, incredible events that I remember them to this day. But I didn't feel playful. If anything, I remember being pretty upset. My parents were paying good money to send me there and I wasn't getting any exercises on those days. Every day was pretty much the same. We didn't go for walks or play outside at least when I was there and save those two special occasions we rarely deviated from the routine. But that's the thing- it never felt boring. I never had the impression that I didn't want to be there. I didn't count the minutes- unless it was Friday when I would finally get to see my parents. Perhaps it was the mindset that I've had. I was there to get better, to reach further, to make progress. Perhaps it was the fact that people who worked there, young energetic ladies called Conductors, were warm and seemed to have really cared about us. Perhaps it was the surroundings- vibrant and fun- Full of color and humor. I was a big Disney fan at the age of 8 and the floor seemed to echo that sentiment with Donald Duck posters everywhere. I was in a few closed institutions as a child. Be it for surgeries or rehabilitation. My parents tried a lot of things to get me to walk when I was a child. And let me tell you one thing: I think that how you feel about where you are and how you feel about yourself being there is just as important as what approach and method they use on you. There was a sense of optimism I wasn't able to replicate in those cold, distant places with white walls. I didn't feel like we were wasting time. There was a purpose to all that we did. We were never simply in the way. Over the years to come, elements of the Peto method spilled over to rehabilitation wards and facilities in Poland. My mom never wanted me to sit idly as I waited for the school year to begin, and she'd always find some exercise program to sign me up for..One Summer, I ended up Children's Memorial Health Institute's rehabilitation wing near Warsaw. It's really hard to explain why I hated that place. It was still a hospital. The OR's were in a different part of building, but every night I felt as lonely and abandoned as I did when I had my surgeries at the age of 6. I slept in a hospital bed. I wasn't wearing pajamas but was in a hospital room with a nightstand. When you went outside into the corridor you saw a hospital floor. In a truly Hungarian fashion we called the women that worked there "aunts". But they were nurses. The same cold and distant I will not be bothered type we called "sisters" when I was six, that tied my hand to a bed railing and told me to pee in the bed when I asked for a bed pan. Nothing that extreme happened that time around, but you'd see a lot of abandoned children, kids after surgeries and everywhere you turn sadness and depression. I wanted to be out of there, it felt like some holding place. We would do a few types of therapy every day, but there was nothing to look forward to. My mom noted that without parents present, some of those kids would not even make some of their daily appointments. There were there so long, that they'd be easily forgotten. These days I hate even going through a hospital and there was a time I had to live in one. It feels you can endure a lot and work hard if you have hope. A lot of those places felt hopeless to me. And more than anything I wanted to not be there anymore.
Wednesday, December 19, 2012
I've never had issues getting through airport security. TSA agents were always kind and concerned with my well being. If anything I wondered if they're being too delicate with me to assure everybody's safety. They always checked my waist and back with the back of their gloved hands. They patted me down thoroughly but always asked for any sensitive areas on my body to avoid. They always talked me through the whole procedure. I guess if you consider that there are disabilities where this process l may be painful or even run a risk of injury it makes sense. On the other hand you have to ask- will this be a failproof way to detect chemicals and explosives and guarantee safety everybody on board. If there are places that they will not get to check, how can they be certain of anything. Most of the times they don't even make me take my shoes off after realizing that it's a difficult and time consuming thing for me to do from the wheelchair position. Especially since they know that somebody will have to help me put them back on after my legs become too tense and too spastic for me to do it myself. While they swipe the exterior of my frame and wheels, shoes and gloves, they never force me out of it. They never take it apart or x-ray it, remove the Velcro cushions or other things that may come of. Doing a really thorough inspection of every person with a disability would probably require a lot of time, manpower and knowledge that they don't have. There would be no way to streamline the process in a reasonable and predictable way. A lot of people would end up missing their connections if you were to conduct every test known to humanity on every person boarding a plane. But, I guess, the same could be said about able bodied people taking a flight. Are we really that much safer if in places without scanners all they end up doing is having passengers go through a metal detector and taking their shoes and belts off. To do it properly I guess you'd need them to strip, maybe reviewed by a doctor? You'd definitely need a medical practitioner to shed a light on the needs of all the different types of disabilities. Sometimes I think that all those security procedures are there more for our own peace of mind, so we feel safer rather than actual, effective safety. Death in a metal can many feet in the air is a very graphic concept. But have we really been going about it the right way? Have air catastrophes really been such a frequent problem? I want us to consider what we sacrificed and if in return what we really got was safety.Is a plane less safe by design than mass transit? We've had incidents with metro systems in Europe quite recently, how can we protect everybody there? What makes air travel stand out I guess is the number of potential causalities at once. Not that it happens that often. My brother always says he'd much rather pay some handsome fees than have to put up with the humiliation of airport security we've come to accept as normal. I'm always very patient with TSA agents. I know they are just doing heir jobs. There's a lot of waiting- as people go through detectors my wheelchair won't fit. So they put me by a little open area cut off by tape or ropes to form a square as I wait for an agent of a proper gender. Shoes may or may not go off, depending how determined the agent is and a few minutes later, minutes of feeling and swabbing the worker assisting me pushes me further to the gate. Note that it takes longer to get there in a wheelchair, not only because carpets are pretty much everywhere, but because I can't use escalators that take you quickly to the destination . Wheelchair elevator are always in the furthest corners of the airport and getting to the gate feels like taking a long detour. I wrote this piece after reading about a 12 year old girl detained when some of the tests for chemicals came back positive. She was in a wheelchair and about have some type of a procedure. Her story caused outrage. I can see how this is stressful and scary on anyone and more so a child. But I can also understand how within the system we've created everybody was doing their job. And what happens if one day terrorists do use a child or a wheelchair, even for a test run because someone was not thorough enough. Can you imagine the outrage then?
Monday, December 17, 2012
"When people see me in my wheelchair they assume I'm on medicare"- tweeted one of my followers in a private message about reactions he gets from the people on the street. As much as I understand and share his sentiments, what I'm concerned with more is that politicians left and right seem to share that same limiting view on disabilities. Disability is a social problem you "deal with". Disability is a cause you throw money at. If I have a "disability" it is assumed that I'm interested or a recipient of free healthcare or social support programs. The follower I mentioned and I have few things in common besides being in a wheelchair all day and dealing with people's attitudes, but we both went into high end careers so we can have professions allowing us to rely on ourselves and not the government to give us things. People with disabilities come in all shapes and sizes. All social groups and income levels. Free healthcare is not something I need for myself- I pursued law quite frankly so I wouldn't have to. But one thing we all have in common- is the need for accessibility and a need for accommodations. Because even if I made a million dollars overnight, I still can't jump over a flight of stairs. I can't take an exam, I can't go to work if proper solutions are not in place for me. And this is the context that disability never comes up in political debates. I only hear it it framed as a healthcare or other financial concern. President Obama has been praised for the dedication he has been promoting his overhaul of medical system with. Some people have conditions requiring constant medical attention and the bills for prescriptions mount. But outside of support, this administration's efforts are less impressive. We may speak of inclusion and we may speak of change, but actions speak louder than words. Justice Department has not been very proactive in establishing or enforcing some of the ADA policies. Most famously, the standards for accessible pools have been put on ice for two years. Only recently they've come up with new testing accommodations guidelines to the Act passed four years prior. Two points need to be made here. When a journalist was writing a story about my problems with LSAT accommodations all these years ago, she was told by a person wishing to remain unnamed, that they are understaffed and underfunded. And that was under George Bush. There is little understanding of inclusion policies across the board. This is not a left or right issue. Mitt Romney spoke against autism and early intervention programs, while Ron Paul wanted to get rid of ADA all together. Of course in reality he couldn't. A lot of statements and stands a politician makes are verified not only by the political climate but also what is permitted by the legal system. ADA is not going anywhere. Still, so little interest and regard for accessibility is troubling to me. When I was applying to law school again, the Law school admission test was just getting off probation for disability accommodation violation. That was maybe 7 years ago? Now I hear of law suits popping up again for the same type of issues I was dealing with in 2006. These are private suits, but Justice Department intervened with information about new instances and plaintiffs. Information, it appears they had and collected but never did anything with. At least years ago they were launching their own investigations. Things are not looking good. I know that for a parent with a disabled child the ability to pay for therapy or treatment may be of a main concern right now. But consider this. One day the children will grow up. And they will want to function out there in the world and be as independent as they can. And then they will learn that their desire to be independent is meeting very little understanding. It is not a priority. Perhaps because politicians themselves never had to deal with it, perhaps because it's not as media friendly as cutting someone a check. Perhaps it's a matter of awareness. But it's a bigger problem. Consider this: typically when you see a lawyer's ad listing "disability" as one of their practice areas it means benefits, not accessibility. Good luck finding an attorney focused on ADA issue. The actual change I think has to come from us coming together and doing something to change the attitudes. Don't wait for politicians because you may wait a lifetime. With this, I think it's a good place to pause as I expect to be making a big announcement in a week or so
Friday, December 14, 2012
As I seem to often reflect on the years of my childhood spent in Hungary and what it was like for me to be for a few years on and off at the Insitute for children with my type of disability, a lot of Hungarians connected to the method reach out to me on Facebook. I rarely give it a second thought if they feel that my story is of benefit to what they're doing I welcome their requests. Rarely it's somebody I actually know or have a chance of meeting. But the world is a small place and social media make it even smaller. A couple of days ago I got a friend request from someone I have not seen or quite frankly thought of much in 25 years. It was one of my Conductors- the ladies that worked on our floor who were charged with every task from exercises to taking care of us. When I got the friend request I wasn't sure who it was. But I told her that I always liked her first name and that I remembered having a Conductor named Marika. Turns out it was her. In turn, she remembered me, my mom and my dad, who at that stage alternated every weekend when they flew in to Budapest on Friday to pick me up and bring me back Monday morning. (Later they would get an apartment in the city and take me home each night). I remembered had vividly because she had a wild sense of humor and a lot personality. She was just fun to be around and laughed a lot. We called her "crazy Marika", but not in a mean spirited sense- she was very noticeable and very much out there, stood out in my memory quarter of a century later. I don't think I could recognize any other person that worked with me at the Institute to be honest or remember their names. And I think I wrote about it before. She was the Conductor that was moved to tears as she was leaving us, as we were weeping as well. I remember how on her last night she came down to our floor and sat with us watching us sleeping on our plinths that served as beds at night. Why were we crying- asked Andrew Sutton when I shared the story with him- What is this bond between a child and a Conductor? I really don't think it's complicated to be honest. They were young ladies with a lot of heart. They were not cold detached nurses with thirty years of work in some hospital they hated, focused more on watching the tele drinking coffee and never be bothered. They saw us as we would see them every week. It's a human reaction to be attached. You would probably expect some deep revelation about the nature of Conductive Education at that stage. But the attachment, at least for me, didn't come from the fact that they were in charge of daily exercise routines and them issuing commands. As exercises went we've always followed the same scripts and sets. At the time it didn't feel like they were telling me to do things. It seemed more like we were all following our assigned roles, the scripts were already there, they didn't make them up on the fly, ithe source of it seemed external. But consider this: A Conductor serves your food. A conductor bathes you. A conductor helps you get dressed. A conductor takes you to the bathroom. For kids that were there in the overnight setting there was nobody else they would see. There were only other children and Conductors. Unlike any other institution I've been in there was no other personnel to perform different tasks and functions. During the week you don't interact with anybody else. Some of us were picked up for the weekend (My parents only missed one), but you knew that there were kids that were not taken home for many weeks at the time. My mom used to described the anticipation with which the children looked at her as they waited to see who and if if would come for them. I remember staring at the door a few times myself. When I say Conductors were like mothers I don't just mean to say they were motherly, although they were loving and warm. But they were actually raising some of those kids whose parents were too far or too busy to be there. But if you ask me why we cried, I'd say it's also because we knew something was over, something would change- and in a setting based on a familiarity of routine change was scary. Marika remembers me from the red floor, which was were I started. Sometime later, as we grew they packed us up and moved us to the orange floor- which was scary too. It was sudden and I thought my parents would never find me (I remember leaving a note in Polish with instructions) but if I had to be honest I'd say it was the change aspect of it that felt like it was introducing some unfamiliar chaos.
Wednesday, December 12, 2012
As a child I've spent a few years in the world famous institute for kids with Cerebral Palsy in Budapest. Through repetitive routines and daily activities I became more mobile and independent. Twelve years ago I found myself in the city again, and once more it changed my life and inspired to reach further, although in a different way. I was there only for five days to present a paper I've written for a student conference. The first time I was somewhere, I was abroad by myself, with no one there to help or assist me. The first time I've given my disability, a condition I've spent years dismissing and succeeding inspire of enough thought to research it and build a project around it.Central European University was having a call for proposals on topics related to transformations in the region. Mine was on "Living with Disabilities": How people with conditions like mine were perceived during communism and how if at all it has changed. What legal tools originally lacking were put in place to improve a quality of life. I didn't do an amazing job putting it together I must say. It was a busy year. Just two weeks earlier I came back from America, where I was competing in the finals of Jessup International Moot Court in Washington, DC. But that time my brother was with me. He got us a taxi, helped me to the hotel, pushed me around town and watched me argue. The US trip was a great success on the academic level, we ranked 12th out of over 200 teams I believe after months of preparation, for years to come the best performance from a Polish team. But personally I felt defeated. What was the use of it all if I can't function by myself out in the real world? This time I wanted to do it right. I needed to try. I went to Budapest alone. I knew CEU, the famous George Soros funded school would most likely be wheelchair friendly. I knew people would pick me up and take me back to the airport. I knew they made special accommodations for me to take a plane rather than the train. I knew that there would be other people there if I needed anything. At the time it seemed stressful and logistically complicated. Most activities, from sleeping, eating to presenting, were happening at one building. All I had to do was get there. A very modeern complex under one roof, part dorm style hotel, part dining hall part school, all I had to do is get everywhere on time. At the time it seemed like a big deal, because I was out of the house, without anyone and I survived. The funny thing was that the city outside these walls was even more inaccessible than Warsaw, but it didn't matter. The only downside was that when the Polish group went out to explore the city they left me behind. That was a sneak peek of what it would be like to be in a wheelchair unfriendly city without my parents or other family members who cared and had the energy to strain their health just to have me included. My mam and dad would have gone out of their way for me to go and have see and experience something there. I did go out one time for some lecture somewhere in town and I took a taxi there. It was the cab driver who thought me how to properly align my chair at an angle in the corner between the passenger seat and door to properly transfer in and out. I never needed to learn with my dad putting me in and out. That was one of the most useful skills I've gained, I've just used it an hour ago when my friend gave me a ride. Being at CEU, as short as it was made me feel like I'm living one of the teen sitcoms I grew up on. It made me think I can actually think of doing something like that long term and that I'd manage. It's a very esteem boosting idea. I can do things for myself. I've spent the next semesters writing more proposals but none got picked. Without that preview experience I would not have the courage to even dream of going to America alone. It was short but touched me profoundly. When I told the organizers about my years at the Peto Institute, they were upset I didn't tell them beforehand, because they would've figured out a way to have me visit it. But I didn't. They tried speaking Hungarian to me, but I spoke it no more. Still I left overwhelmed with how warm, fun and curious the student body at CEU was. It inspired me to focus on disabilities rather than ignore it- I've set up the "Active Life" foundation in Warsaw just two years later.
Monday, December 10, 2012
I was crossing a street a week ago when all of a sudden my body became tense. The lights started flashing, the cars kept on waiting, I was in the middle of the second lane and I couldn't move. Desperately trying to push forward, my arms kept making small random movements and my hands were sliding off my wheels. It's not that I simply froze or that I felt like a deer in the headlines, I just couldn't snap out of it and get out of the crossing fast enough. As much as I wanted to go, my body was slowing me down and I couldn't compose myself. I was in the street, at night, cars waiting left and right and the memories of being hit by a bus came to me. Amazingly, it's been eight years, and still I think about it. It's not that I relive that moment. But the feeling of being powerless, of the impending doom grabs a hold of me sometimes. Mostly I manage through it, fighting the resistance of my own body. I guess I usually get myself so worked up crossing University Avenue, one of Gainesville's busiest street, knowing how dangerous it can be and how quickly I need to cross it. Get into the street and get off it. That messes with my head. Yes, it's been many years, but sometimes I have moments of panic. People get hit here every few months, granted sometimes they cross in random places, but earlier this year I've seen two people picked up by ambulances as I was walking by. Eight years ago I was hit by a bus. It took off from a bus stop and I guess the driver didn't see that I was still in the road. It was in the middle of the night, he was an older man. Luckily for me he was going slowly. Ended up knocking me out of my chair, as I ended up under. He thankfully was able to hear screams in time and stopped. I've had road rash on my arms, my knees and my back under my arm was bleeding. I was shaking in street as I lost my shoe and I thought I'd be fine with a little bit of sleep. Then I realized how severe the situation was as my wheelchair wheels were bent out of shape and the frame was smashed. I remember what movie I was watching earlier that night, it was Hero they were playing on campus. I've seen this one already, I could've stayed home! If only. As the ambulance was taking me to the ER I couldn't stop thinking how much I have failed. I've failed myself, I've failed my family. It was my second month in America and I blew it. How will I tell my parents? They'll tell me to go home right away. In the days to come my friends advised me not to say anything, at least until I have a plan and get an attorney. For the next seven months my lawyer and the city were going back and forth trying to work out some kind of a solution. I was expected to go home the next Summer. My attorney knew that time worked to my disadvantage, so we couldn't press the city too much. They could've afford to wait, we couldn't. Perhaps if wee knew that eight years later I'd still be in America we would press further. Also, at first it felt I wasn't very affected. I was alive, nothing broken. I was sent home with little packets of antibiotic and a huge bill for a very expensive ride. My attorney was not comfortable fighting for too much if my injuries did not seem permanent or extensive. It wasn't until later that I've noticed that some of the wounds would not heal well and scar badly. But most of it was psychological. For weeks to come I'd have people push me through crosswalks because I was too paniced to do it myself. I've had a hard time sleeping. And I was going into my first set of finals having experienced the biggest trauma of my life. But I am alive. I was lucky. If he was going a bit faster I wouldn't be around to talk about it. And I felt bad for him. Apparently, a few months later he had a heard attack and left the transit service. I didn't get a big payout. Just a new (expensive) chair and a few thousand dollars. My attorney wasn't entirely happy with what we've got, so he waived his fee. But I was alive. And yes, not a week goes by that I don't think about it and how fragile and random life is. The scars, they itch sometimes. A lot of times I will not start crossing a street if I see a car coming. And every now and then I have a panic attack
Friday, December 7, 2012
Every now and then I get an email from a disability non profit. Somebody there had seen a video about me and decided to get in touch to see if we can do something together. I have never seen myself as somebody particularly amazing, and it's not my place to judge. I can see how a story of a person like me, someone who despite a fairly debilitating condition moved from a foreign country, got an education in a pretty respected condition may seem attractive. And I'm always willing to help. A lot of organizations that decide to drop me an email deal with children. Some employ the same forms of education and therapies I've been through. To them having me on board has the "before and after" quality, that gives parents hope they need to see that even though you have Cerebral Palsy with the right amount of work you can get out into the world, hasve goals, get a career, be independent. I have also not seen very many people who talk about the experiences of growing up with my disability. What it was like having some of those things done on them and to them, what their perspective, their take on it was. What is it like for them today, what they took from it twenty, twenty five years later. People like me exist and it's not like one day you simply not have Cerebral Palsy, but I never hear about them and from them. Dealing with Hungarian Conductors, I've realized why it's useful to them for somebody to tell the tale.
Organizations do contact me from time to time, but their interest is short lived. A lot of times initially, they message me about "inspiration" and "changing the world", but as soon as I ask, great, what would you have me do? The contact ends. And I wondered why that is. I'm thinking a lot of those structures are small and local, formed to do something good, that get excited about my story and write on impulse. They really don't have any designs on me, most often it feels they barely have ideas for their own existence. I think some of them may have changed their mind, with others the excitement died down or they might have gotten embarrassed that they don't have any ideas or anything to offer or in some cases that they've been stringing be along for weeks. It's odd but a lot of times there's not even a follow up response and that's the only way I can explain it. I hope it's not intentional. I guess many people in their original mindset think that I can generate instant publicity for their organization. I'm a foreigner, I have a respectable profession, I have a life story with twists and turns, I have a disability that people often look down upon, that's an instant press tour and people will open up their wallets when they meet me, right? Wrong. If you have problems generating donations and verbalizing your own mission I probably can't fix it and make it all go away. I think that's what the expectation is- to revitalize interest in their cause and magically make their issues go away through interest in my story. But I was not even able to do it for myself, by myself. Building a nonprofit is not a problem. You can put together the paperwork fairly quickly, you just do it online. It's knowing how you want to go about it, having a plan, getting the right resources.Don't expect for it to solve itself later. It's heart breaking, because those thing get started out of need for solution, kindness and drive and willingness to help . And I'm not knocking that, but it's not enough A lot of people have started foundations with no way to run it, hoping that opportunities will emerge later. If they don't the organization is there, but really isn't. In stasis, as it waits for better times. My story is not one that gets people really excited. The media don't find me that attractive and don't really know how to bite it. It's more of a "Ah, interesting" type of a tale, rather than one that gives me standing applause when I tell it. I'm not making headlines, I'm not writing a book. But it does make people stop and think, if only for a minute. Simply put- if you expect it to be all about it me, it is not going to work. If there's an actual purpose for me, a team of people I can join and a thought through concept that uses both my experiences and skills then I do want to hear about it. Because the reasons for why people start nonprofits come out of real problems. And I always wanted to be part of the solution.
Wednesday, December 5, 2012
Few weeks ago I've received a phone call from a number I didn't recognize. Quite frankly if I knew who was calling I would've most likely let my voice mail get it and then never called back. A friend from Poland with whom I parted on bad terms was reaching out to make amends. He was leaving America for good and making his final goodbyes. His dreams of America was over. As I listened to his story, this person I have not spoken to in years, I realized that we shared some of the same fears and frustrations. America is not always the most welcoming country. Sometimes, try as you may you will not make it here. Many of us, walking Americans will still feel like aliens and alienated. Although you're here legally, you're from somewhere else and you always will be. I remember many law students from my country who after the initial excitement of wanting to try it in the Big Apple went back, often defeated. They come here, as did I for a one or two year course in comparative law. It limits their ability to sit for the bar and practice to only handful of jurisdictions, New York being one of them. Unlike my peers I've stayed and fought hard to be accepted to the Juris Doctor program. This gave my the same entry level education my American colleagues have. If I so desire, I can sit for any bar in any state and if I pass, practice there. I was made aware a long time before that even in jurisdictions that allow for international degree holders to work as lawyers they are often treated by employers as second rate attorneys. Part of my logic behind going back to law school, although I could've moved to New York and like many others eventually get it, was to give myself the edge. My friend of course didn't have it. He said in his circumstance making it in the profession was difficult. But then, I'd say in the job market crisis it is and will be difficult for everyone. He was tired. Tired of the American big city mentality, tired of making a living, but only month to month, client to client, not enough to really have a structured life. Tired of being far from home and tired of having to make a home in a strange place. Tired of wondering what the end game is. Can you really shut the door on a life and a family somewhere across the big pond? Tired of being reduced to the role of a lawyer and a go to person in the Polish community alone. Tired of living in the city where only some can afford to be. The decision to go back was obviously not an easy one. He's spent many years building a life and a career in America. All that work and energy is not an easy one. He started a family here. Again, a major factor to consider. Can you sense the desperation in wanting to undo the last five years of your life? It's not as if your previous life waited for him on pause as time stood still. It will be that much harder going back. But then, he has more options that I ever had. Poland to him was never this hostile land that hindered his growth and considered him a liability. He can go to Germany or France or UK. Europe can be a wonderful place. I share some of his feelings. I'm torn between my family that I miss and love and a place that at least offers me a glimmer of hope. Maybe that's what all first generation immigrants feel. But my considerations are different. Don't you think I don't want to spend time with my nephew and niece and eat my mother's cooking? Perhaps, like him I will never be at home. But for as long as I have the energy to try and fight I will do my darnedest to make it a reality
Monday, December 3, 2012
The Hungarians could never pronounce my name or even write it. What sounded so obvious and plain to me - this is who I was, this is who I have always been- became some incredibly hard task that only few cared to master. On the list of children in my group during my years at the Peto Institute I was known simply as 'Rafael' a variant they've made up for me - and nothing else. I didn't have a last name. Strange concept in a country that puts last name first. It said 'Rafael' on my shower schedule and the cabinet they've given me for clothes and few personal belongings. Talk about your cultural immersion at the age of seven. From day one people were talking to me in a strange language and calling me a name nobody called me before. Soon I started calling myself that as well. And not having a last name in a way made me feel special. There were many Gabors in the building but only one Rafael. I didn't even need one. My last name as well as my first also became a problem when I moved to America. "ł" became transcribed into "l" and the second part had just too many letters coming together to build a sound. The " L with stroke" is simply not just a fancier version of "L"- it makes a sound similar to W in English. Also in Polish typically the stressed syllable is the second from last, yet all my professors called me 'Raffalle'. Trust me, you don't argue with a person who can change my name. It became annoying, because not only it wasn't my name as it sounds nothing like it, it's not what I wished to be called. I became Ralph in America, because this is how all my Polish friends with my name called themselves in English. The only person who has always ignored my wishes in that regard was my former boss. And he oddly found great joy in seeing my reaction to whatever he thought it sounded. The other issue is my last name. Americans, and English speakers with particularly soft accents and rounded vowels have the most problems with this, while my Australian friends grasp the concept pretty quickly. The S and T together trip the up, while they have a hard time understanding that r and z combined produce an entirely different sound while they attempt to say it one by one. No, it's a sound expressed by two letters. It's a bit like "je" in French. I usually broke it up into syllables and have them repeated Strza-u-kovski. Putting it together is once again a problem. And I've noticed, if they look at my card and try to read off it they're lst again. It gets really difficult on the phone, although I do enjoy hearing an occasional telemarketer struggle. It gets in the way. I couldn't use my name in the branding of the proposed law firm because nobody would be able to say it. My attitude has since changed. I don't say to myself, I will teach the world how to do it and they will know my name! I don't give 15 minute lessons on how to say it properly. Once a friend came up to me very excited to tell me he practiced it for a few hours while at the gym and still he got it wrong. My cousin changed his name from Barszczewski to Barski because the sh followed by tsch was too much for people to handle. I use a simplified version of mine Show- as in shower-w-kovsky. But who knows, if I give up on that I might end up as Starski. Or once again - Rafael just like Cher or Madonna.
Friday, November 30, 2012
When I was crossing the street on my way out to grab a bite two nights ago I noticed a larger than life animatronic Santa Claus on the 3rd floor balcony in the building on the other side. It danced and sang Carols very loudly, it turned on and off randomly with nothing in particular triggering its preprogrammed behavior. As I was looking up, the angle, the reflected light and shadow gave it a particularly spooky quality. I quickly determined it's the creepiest thing I've seen in a while. And then I remembered how afraid I was of a stuffed Maya the Bee mascot that was hanging in a window of one of the stores in Warsaw. My mother can tell you the story. I didn't even have to see it. When I knew we were coming close to it I'd get all tense and hysteric. I could not explain what it was about the giant mascot that terrified me. I loved the German novel about her adventures as well as the Japanese nighttime cartoon based on it. And it got me thinking about what Andrew Sutton wrote about his blog in a point about upbringing. How what parents do or not do may have lasting effect. And I think it's a true point. I never gave it much of a thought honestly, until I've forced myself to revisit my childhood to remember as many experiences from the Peto Institute as possible. It became obvious how a lot of what and who I am today is triggered by something that happened to me in the past. It's hard to distance yourself from things still present in your mind. Your fears and joys, triggers and phobias grow along with you, although objectively they might not impress a grown man like me today. I don't have a fear of plush toys or clowns, but I do have a fear of water. I remember fighting for air and going under as my dad tough me to swim. It went beyond exercise, splashing around, practicing balance or therapy. My dad wanted me to swim, like other kids my age. For years after the fact going in a swimming pool for me meant tension that had me frozen with panic. A few years ago while visiting my family in Warsaw, I've considered having a surgery on both of my knees. We went to the same traumatizing hospital that I remembered from when I was six. I thought it would not be a big deal. I'm bigger, stronger, I'm an adult. I can put my past in the past and just let things be. Yet, as I as there, not so much the memories, but the feeling of being powerless, trapped, lost and lonely returned. As I was getting examined I felt six again. That's when I realized that we never become different people over night. Just because I'm grown doesn't mean I'm someone else. That's why upbringing matters. Because it makes who we are. Some things we can change, grow out of or get over, but we are ourselves forever. We spend a lifetime in our bodies and more importantly with our minds. Children don't come with instruction manuals do they? That why I write about my years of rehabilitation so often. My friends don't really understand, but it's not simply something that happened to me at one point and is now over. Once I read that past and future are only illusions. It seems to me that it may be true about human nature. There's only us. And I'm sure every parent makes plenty of missteps. But are they really crucial? Do we scar that easily? I'm sure we all have things our parents have done we blame them for at least to explain our own behavior. But then, if children and the human psyche were indeed as fragile as we think we would have never survived evolution.
Wednesday, November 28, 2012
Given how often Andrew Sutton has been citing my humble entries you could get an impression that I'm a highly regarded source in the world of Cerebral Palsy, Conductive Education and independent living. I think he is far too kind. I would like nothing more than to share my experiences with anybody that listens, speak at events and talk shows, but trust me. My story impresses very few people and my phone has not been ringing off the hook. It's not that that I think I'm amazing or that I seek fame. I've spent many years getting advanced law degrees so I really don't need to promote myself as a tabloid sensation, but I'm willing to put my time and energy if it helps others and brings attention to the things I care about most: inclusion, opportunities for people with my type of disability and wheelchairs in general, and bringing barriers. I want to talk about hard work, parental dedication and applying yourself. But the problem, I think is bigger than me. I can share the anecdotes from the Peto Institute for many years to come, but it won't change the fact the fact that I think we have failed. We have failed as the Conductive Education community - pupils, conductors, parents, friends and supporters to explain why this is important. Why the media should pay attention. We have failed to show the need in highlighting success Cerebral Palsy stories. What it's like to live with this disability and how very little progress can mean a drastic increase in the quality of life. You may think my story is impressive (I think it's really not, it's simply my story and everyone has one), but the media disagree. In a blatant attempt at self promotion and looking for a way to talk about experiences with CE in a exciting way, I've sent the link to the video with me in it to a number of TV shows, non profits and news outlets. I know both online copies combined have been played a few hundred times. It's like one of the reporters at a local TV stations told me, when she called me a few weeks ago trying to figure out who exactly I am and how I fit in to this thing. It's interesting and it may be inspiring, but it's not happening, it's not developing, it's not news. Andrew in one of his latest pieces talks about the need for joy, optimism and positive routine. I think we still haven't found a way to talk about these things in a way that explains that example, hope and inspiration are crucial to kids and parents a like. We've got to find a way that uses attractive terms fitting today's media model. But if it's not a miracle, if it's not a cure or a drug or a magic spell, if it doesn't happen over night I doubt that we can make anybody understand. This is exactly the problem that I've had dealing with American immigration. Nobody quite understood why my story of life with Cerebral Palsy and years at the Peto Institute matter and can be helpful to new generations of kids And note one thing: I've been fortunate enough to be featured in local press a number of times. Gainesville Sun wrote about me twice, Alligator dedicated its spread to me, InSite picked me as one of Gainesville's most interesting among others. But it's not that mainstream media took an interest in what we do all of a sudden. All these texts were written by students. They started as school assignments and the editors were so impressed with the result thry went to print. Claudia Adrien had to fight for every sentence of her story that her publisher wanted to cut. David Cumming saw me at a bus stop and what started as a photo assignment ended up as a feature in the Alligator. Andres Farfan read about me on Facebook, took some pictures and then decided to submit his work to InSite. All these people because their dedication, passion for their work and time and energy to dig deeper brought my story to the public. Because they cared about doing something they found meaningful. And they wouldn't give up when they were told to drop it. But I have yet to be interviewed by a real, grown up reporter. And I guess they really don't know what to do with me. Even the public station only sent their student reporter to the Academy only after I went there a pleaded with their news assignment director. (The segment openly panned by the CE community never aired). For now, Oprah isn't calling and I have always felt that the very hermetic nature of CE world isn't helping. But again, the same is true with any disability initiative. The media may care about me if I build the nonprofit I've been talking about, but how can I build it without the support of the people that first need to hear about me? Maybe it's time to say it. You may care as do I, but the world probably doesn't. Now what?
Monday, November 26, 2012
One thing I was always aware of was how much my parents had to go through to send me to Hungary. Every day of exercises in the world famous Peto Institute had a price, actual monetary value expressed in dollars. If I remember correctly the meals and overnight stay were charged separately. Foreign currency was illegal to have and my parents had to find off the books jobs to get me there. I was fully aware how much my parents have put into this to make me better, an odd realization to have when you are seven, eight, nine or ten. I don't think my parents meant to put all this extra stress on me, but in my family you could sense a lot of expectation that something will happen, something that will make me better. Progress was the operative word with all the methods we have tried. Thinking of it, planning for it, talking about what will it be like when it finally happens. On my first day at the Institute my dad called me (he was in town staying at a local worker's hotel while I spent the night at the Institute). -Have you made any progress? He asked. And I remember how I replied: Dad, I've only been here a day! I remember it vividly. It was the Fall, September if I remember correctly of 1986. It's not that he demanded progress or that he was mad or disappointed if it didn't happen. But there was a lot of hope for this, that this will finally work that translated into urgency that it needs to happen. And seeing how everybody is excited for this "progress" to take place it was putting all this extra pressure on me. Because what if it doesn't? If I'm not advancing fast enough maybe I'm doing something wrong. It's a huge weight when someone has so much invested in you. And I don't mean just the money although, let me tell you knowing forint exchange rate at the age of seven is probably an odd thing by today's standards- but time and tears and prayers. My parents would do anything to make me walk. They've had a dream of me making my first three steps and they talked about it a lot. Three steps, no braces, no sticks. There was no gadget my dad wouldn't buy me if that happened and no money he wouldn't pay to any therapist that made it possible. He said it a number of times, he'd sell his car, our apartment, just make me walk. All we needed was the darn three steps. I guess this is one thing I didn't properly explain when I talked about my Peto routine. When I tried to explain how on one hand knowing how things will play out has a calming effect on me, while on the other - the monotony that I've adopted into my my life takes a toll, somebody said, well- education can get boring. But in my case this point is flawed. I never rebelled against anything that happened at the Peto Institute because to my family this was more than education. It was the solution to all our problems, it was the central point of helping me get better. The good thing about being at the Institute, sweating and working hard was that I was doing everything I was supposed to. All there was to focus on was now. I didn't have to worry about the future. Back home I've had nightmares. Not being able to walk, being stuck in a wheelchair, that I've always envisioned as one of those big and bulky things you see at the hospitals seemed like the end of life and the end of hope. And yes, if I'm not progressing, I'm failing. Looking back, I have to say, I wish my parents had known a bit more about my disability and the Peto method to find a way to help me navigate my own emotions. Maybe take some ff the stress off. It would definitely give me less to work through as I'm going through adulthood.
Wednesday, November 21, 2012
I was going to write about something entirely different, but then my smartphone called it quits on me. For good. As I decided to do the platform update both the network carrier and the manufacturer recommended it chose to froze for a few hours in the middle of backing up data and never unfroze again. Pulling the battery out as many times as I tried it accomplished nothing but brought me back to the same progress screen over and over. I quickly realized that I chose odd timing for such experimentation. Thursday is Thanksgiving so everything will be closed, the day after is Black Friday, when although some businesses will be open and make a killing, mostly stores, services like city buses will not run and possibly couriers will not deliver. I already knew that UPS will not work Saturday and Sunday so if I waited any longer it'd be until sometime next week until I got a working phone. On Monday I'm supposed to be having an important conversation with a client, how can I do it without it? To make matters more complicated, when I tried to submit a claim to my insurer, even as I chatted with a live agent, I was told I need to call their number to verify it. No amount of explanation that I don't have a phone to call from seemed sufficient. My laptop barely boots up for me to use Skype on and I'm waiting on a new one. By some miracle it did on a fifth try. After paying a deductible that I could buy a new phone for I was told to expect one tomorrow. But it got me thinking about the extent we rely on technology again. I went to a birthday dinner at a restaurant maybe two months ago. All the guests were social and interacting with a 1000 of their closest Facebook friends just not with each other. It felt odd to me how everybody was much more involved with their own portable world on the screen that anything actually happening around them. Birthday boy's parents, a couple in their 60's perhaps didn't have a smartphone on the table and felt very excluded. But then I thought about my own behavior. How I pull my phone out constantly to check time. How when it's not there something is missing. How I've learnt to check my messages every chance I get. How when there's something I'm waiting for I even wake up throughout the night to see if it's urgent. But it feels good to go off the grid for a while. I can just relax and enjoy my night for once with the world waiting at home. Without the guilt that there are people that I need to get back to right away. How do I get so worked up? I really enjoyed getting off the grid, if only for a day. Hopefully today I'll get back to things as they are. Blackberry surely owes me. After I put up with their operating system that kept freezing on me they better make it up to me. Either way this week is Thankgiving. With no family in town [or country], I'll dedicate this time to self reflection and eating. I don't expect to blogging until Monday. Have a great and warm holiday
Monday, November 19, 2012
During my time at the Peto institute in Hungary all my weekdays looked pretty much the same. My daily schedule was divided into blocks of exercises that would always come at the same time. You knew what to expect, what would happen next. There was some comfort in the routine, because all I had to focus om was the moment. The exercises themselves followed a script, a sequence we all knew very well. Every day we would have meals at preset times that followed a certain daily procedure that led us to the table. It felt like there was a purpose behind it, that the goal was to do the work and "get better" whatever that may mean to you. With purpose and optimism there was no need to question or worry about the future. And I guess that is what I miss about it: predictability. I often complain that I'm not spontaneous enough. How I like meeting new people that take me out of my routine that often bores me. But I always have a routine to fall back on. In my had I always make plans and lists. I never play it by ear. I stress a lot and knowing what, how and when will happen gives me a bit of comfort. If I'm in court I rehearse, repeat and repeat. i remember how for my trial practice class I would just say my opening and closing arguments over and over in the bathroom to the mirror. Not because I was planning to deliver the speech in its entirety. But with repetition no matter how I needed to adjust I always knew how the different elements went together and transition into each other. If there's a new place I need to get to and I'm not familiar with the route I always try to have a practice run. So I know what to expect. If I go to a party, I figure out when to leave before I'm even there or I secure a ride. I know a lot of my friends are not like there. I remember I went to a classical concert with someone just a few months before I left Poland and they were charged with taking me home, as i took a paratransit to get there. I was kind of surprised when to my queries about what time should we leave and how we get there the answers were more in the lines of when we're ready and we'll figure it out. A lot of my American friends are similar- Josh would always say we'll see what happens and react to the changing circumstances as they unfold. Sometimes we'd find me a ride home at the very last minute or a random friend picked up the phone. It may be more relaxed for some people to just go with the flow and look for solutions only as they have to. I'm talking to a client at 11 and even right now my mind wanders off to think at what time to get up, what to wear and what to eat. I tell myself: It's hard enough with a disability, so I can't risk it and have to give myself the edge. But I can't help wondering- Is it the years of rehabilitation that conditioned me to seek patterns to follow or is it my fear of the unknown.
Saturday, November 17, 2012
I've never heard fire alarms go off as loudly as they did last night. Usually, for the first few minutes you try to ignore it. Perhaps somebody was cooking something, burnt a toast just a little too much and the smoke detectors picked it up. It happened to me before, one time they were even beeping for no apparent reason for over an hour, until the maintenance staff came in to replace the batteries. But this was different. The sirens outside throughout my building started to make a screeching sound. The emergency lights were blinking and firefighters arrived on the scene. I looked through the door watching them go back and forth carrying equipment for a bit before I decided to go out. It was way after 2 am. No chance of getting any sleep or even enjoying the TV shows my DVR had recorded, because of how loud it was there. Oddly, very little commotion outside, as if most of our residents decided to sleep through it. Few decided to bring their dogs out and other critters in cages, but the animals were scared and hardly anything would calm them down. My apartment complex is a big square with 2- stories of apartments on each side and a grass area in the middle. The fire was on the second floor, three doors to the right and up from me, and from the grilled smell you could tell it was a real thing. Even more oddly this the most interaction I've had with my neighbors, some of them I've never even met. People were standing outside talking, trying to guess what happened and who lived in that unit. Some shared other stories about living in their apartments. We chatted for a bit, one neighbor decided to delight himself with a glass of wine, but as many of us went back in drama for more people started. As the fire started, the sprinklers went off, flooding not only the apartment were the fire started but also the ones bellow. Electronics, personal items, furniture, clothes all ruined. Apparently the water was pouring through the ceilings. And it got me to think about how people spend years accumulating things that they get attached to. I've moved around Gainesville way too much to ever make it a home here. Other than a closet full of clothes, suits and shirts that I need for my profession,there isn't really anything that I value or couldn't really replace. I've never properly furnished the place, two years into my lease the walls remain unpainted. I'm not sure what it says about me, if it's a good thing or a bad thing. It's not that I would mind having a cozy little pad but it never happened. I could say it's the money. Or the energy. Or the work. Or the creativity needed. Perhaps it's because it doesn't seem like home? And I saw other people rushing into the apartments to gather whatever pieces of their lives they can collect. In some ways, it was heartbreaking to watch. Some people were pleading with their firefighters to let them back in, gather some essentials. Soon, a representative of the Land lord- Collier Companies/ Paradigm showed up, I guess to help the affected residents, move them somewhere and assess the damage. Soon all got quiet. It was a long, cold Friday night
Wednesday, November 14, 2012
As I was sitting in the audience enjoying a university production of "Ajax in Iraq" I couldn't help reflecting on all the instances I've missed out on a plays, exhibits and movies when I lived in Poland, because of my disability. Here it's just so easy. I have a free evening, I say to myself: I want to see a stage show, what's playing? My disability will never be an issue. Getting into the building will not be a problem. They will have anything in place for me if I tell them I'm in a wheelchair and even if there was some kind of misunderstanding, usually they will just pull a sit out when they see me so I can park there. Buildings old and new, the procedure is pretty much the same. I have no doubt, that from their perspective navigating customers with special needs may be a pretty elaborate production, but from where I'm sitting all I have to do is show up. I didn't get to experience that in Poland. Heck, until multiplex cinemas became widespread in Poland in the late 1990's I didn't go movies that often at all. Somebody had to pull me up the stairs to the building in my wheelchair, then walk up with me up along the isle in to my sit. Pretty steep and as I grew I could easily tip somebody behind me, a step lower who was leading me behind out of balance. When I was very young my dad tried to accommodate me and get me included in those school trips to the opera, museum or the planetarium. Getting me on that bus was often challenge enough. The ride leading up to the event was not enjoyable at all. I knew a moment of truth was arriving. I had to muster all my strength to help my dad if we decided to walk up the stairs. There would always be stairs, you can be sure of that. Every such escapade was painful and stressful for all of us. My dad would pay for each one with incredible back pain, my underarms hurt from where he was pulling me and I would just end up feeling guilty. Guilty and scared that I'm putting him through this and he is trying and failing. Even when my class was planing a trip in advance all I could think of is that I would most likely not go or imagined the pain and the complications if I did. Outside of school trips we didn't even think of planning trying to going to those places on our own time. Granted, my family was never into art that much and after a long week nobody really had any energy to plan a fun a productive way to spend time other than reading, shopping and TV.
But there were shows I would have loved to see. "Metro"- Poland's most famous musical, I must be the last person in Warsaw to not have seen it. But if you hurt the ones you love to see it, you learn not to ask. How selfish would it have been of me? When I was older, before the multiplex area, my brother and his girlfriend would take me to see a movie a few times. It wasn't often and I could probably name all of them. Didn't help with his back problem either. When the new multiscreen cinemas popped up everywhere I discovered I could do it by myself. Just order a paratransit ride for every Friday, grab some corn and see not one movie but two. i guess, I've had a lot to make up for. But for once I could just enjoy myself and I wasn't a burden. When I visited New York I saw "Rent" and "Spamelot" on Broadway. Funny thing. Not all sidewalks had curbs, but the theaters were wheelchair accessible. In Gainesville I've had an annual subscription to the shows at The Hippodrome Theatre for a few years now. I've seen countless student productions, travelling productions of musicals, ballet, and concerts. Some are better than others, but I came, I saw and I took something from it. I've been to galleries, premieres and openings. It brings me a lot of joy to see something as it happens before me live. Culture. I may differ from my parents on this, but I love how it enhances my life, changes my perspective, challenges, moves and inspires. And for someone like me, always watching the life from sidelines until I moved here it makes me feel like I'm experiencing something real, like I'm finally included, without guilt.
Monday, November 12, 2012
Today we celebrate Veteran's Day in America. Buses don't run, mail will not get delivered and some businesses will close. I've decided to take this day to rest and relax, enjoying the longer weekend. For 199 posts I've been telling you about my life and my history. How I grew up in Poland and move to America. How I became an attorney, how my parents sacrificed a lot to send me to Budapest to the World famous Peto Insitute when I was little to make me independent. How Cerebral Palsy affects me and what it's like to be in a wheelchair. What it's like to have a disability that is subjected to a lot of contempt in this country and many false assumptions. I've tried with all my might to make these matters known. And I will continue to try to promote disability awareness and inclusion although I do not yet know how. While many people are initially excited to hear from me, their enthusiasm dies down. Perhaps those are things that not many care about, which explains why we are where we are, but I refuse to believe it. A sad realization: The number one read post on this blog has nothing to do with Cerebral Palsy, upbringing, disability, law and awareness at all. It's the text I've written about my issues with Citibank outsourced customer support. Perhaps I can not get you to care at all, but I shall continue to try. Please watch this video if you haven't already: http://www.youtube.com/watch?v=NViJKdKgkeQ&feature=player_embedded and let me repeat my plea: let me hear from your disability causes and non profits and let's see if we can work together: firstname.lastname@example.org http://facebook.com/LawyeronWheels, Twitter:@Lawyeronwheels and read about me here;In the press
Top 10 posts
1. Misadventures with Citibank
2. Help us find kids with Cerebral Palsy
3.Gainesville community forum
4.American Dream is not over
6. The Cerebral Palsy stigma
7. I want to do good!
9.This attorney is for hire
10. A blast from the past
Saturday, November 10, 2012
I had to be around seven when they realized that, given any opportunity, I would just lean against any back rest. Conductors at the Peto Institute would from that point on make me sit in chairs without it for better posture and balance. It's not that I minded doing the work or that I rebelled against it. I just always did better when there was a goal, a challenge or a task. When I was a little boy and my mom wanted to make walking around with braces a little more interesting for me, she'd have us go from our house to the local video store. It would take many hours, I'd have blisters on my feet sometimes, my hands would hurt and I'd be exhausted. But there was something for me to focus on, a purpose other than "it's the right thing to do". I've been thinking about it more and more recently since I have gained some weight in the last few years and I feel I have much less energy to do anything. It feels much harder to get myself together. Part of it is age- I'm in my thirties, but once outside my door, I feel much more more active. As I grow older I should be moving more, not less to keep my energy levels up. I've become so comfortable living downtown, just a short walk from anywhere I'd want to be and a bus stop, and yes, I've gotten lazy. I was never skinny as a child, but I've lost a lot a weight and built up strong muscles in the first months I was here. In odd ways I may add. It were not my biceps- I looked more like Popeye. Every day for the first few years it would take quite a workout to even get to the bus. To get out of one of the apartment complexes I lived in I had to roll up the hill that felt quite steep just to get to the gate. it wasn't far but because it was high up it would take me about 20 minutes It was some drop coming home at night! The next one had my apartment in the back of the property. The very last building. It could take me 40 minutes rolling around, part of it the street,just to get out of there. And yet I didn't mind. I lived there for 4 years. I didn't complain or mind, it was something I had to do each day to get my date started. There was a reason to do it. I remember liking to do things around the house and be able to them for myself, by myself. like washing my dishes by hand. Now loading the dishwasher feels like a dreaded task sometimes. I've spent hours of the day going places on a bus and back, switching routes and walking between stops. It's odd when I think how much time I've spent commuting that I considered part of my natural routine. It's still hard for me to do things just cause, and it's getting harder to challenge myself beyond my comfort zone.
Thursday, November 8, 2012
I didn't want to comment on American politics anymore. I'm a resident alien- it doesn't matter what I think anyway . But then, somebody called me a psycho on my Facebook wall, others threw a couple of F-bombs around and I discovered how easy it is to make a Friend into a former friend at the touch of a button. I realized that I'm allowed to have a different opinion, that you can rest assured, I'm not unreasonable to hold views without them being justified in personal experiences. What matters to me and to what extent may differ from your experience. Yet, people were telling me what to think, how to feel, got offended if I disagreed and didn't care to explain, got offended even more if I did. But I realized one thing- if you live half way across the world from me chances are you will never know me and if you're so bothered that you can't convince me that you need to resort to profanity, you were never my friend to begin with. I don't need to live up to anybody's standards but my own. What we feel and how we feel it is our own. And I only need to be true to myself. What inspired me to bring up elections again was not not simply the fact that it's finally over, but that text I saw in the Huffington Post that became incredibly popular on Facebook. Dealing with gay issues, it demanded: If you're voting for Romney, unfriend me. What a silly proposition, I thought. There are many reasons to support or detest a candidate, all personal, all equally valid, many of which have nothing to do with gay marriage or abortion. What matters to you may be not as important to others, because as people we all have our own issues we face. I could easily say "If you care about wheelchair accessibility and me you would never vote Obama". But such emotional blackmail is not only unfair and unreasonable, it's immature. The fact is, that with two issues I care about the most, disability rights and alien regulation the administration record was anything but impressive. It caused quite a stir when the Department of Justice delayed the implementation of the requirements for accessible pools, given that the new Standards for Accessible Design were announced in 2010. The government wanted to make it easy on the private sector; The other is a funny story: I was asked to do a presentation on the new Amendments to the ADA. Try as I may I couldn't find anything that fresh. It soon became apparent, that they were talking about a recent set of guidelines put in place in compliance with ... a 2008 Amendments Act. It took four years to figure out the new procedures, documentation and standards. Every year that a thing like that is delayed it means that I or someone just like me can't get somewhere, use a facility or take an exam in a fair manner. When I tell my friends, they don't believe me. How could this be? They were told that Obama administration is the most inclusive and the most progressive. Some smelled a conspiracy or some evil doing by George Bush. But Bush had nothing to do with it, it's been many years since he left office and his father signed ADA into law in the first place. See, unlike taxes or healthcare, wheelchair accessibility or lack of it is not a matter of perspective or a positive attitude. It's a choice between excluding and including people. A lot of parents of kids with disabilities supported Barack Obama for his social programs, healthcare and financial support. Sadly, as kids grow they will want to be more independent and this will not happen without making the world around them accessible to them. They will want to take a test in a setting that downplays the effect of their condition. maybe they'll go to law school and face the dreaded LSAT.The LSAT. Standardized testing... The recent suits that the DOJ intervened in by producing more discrimination examples show that they have been sitting on all this data, yet, they didn't initiate any suits in recent memory. At least prior to 2006 the LSAT administration was put on probation for failing to accommodate. Now, 6 years after my own struggles with the test, I keep hearing stories similar to mine! Let me be clear. It is the administration that should be leading the pack and revisting their prior measures.
How can you not support Obama- a friend asked- he wants to give you a free healthcare. What is this notion that just because I'm in a wheelchair I want free services from the government. That I'm poor, homeless or on Medicare. I chose a career that would allow me to pay for my own and not rely on others. If four more years mean more of the same then we are in trouble. Wheelchair accessibility can't wait anymore. I don't want anything from the government, but to be able to get into buildings and .. pools. The Obama deportation statistics were scary, but so is the apparent new level of hardship and formalities legal international students now face.
In this election I have softly supported Mitt Romney. Mostly in hopes he could do better. Some of his social stands are foreign to me, but one thing I've learnt as a lawyer is letting go of strong convictions. As I'm not a woman I don't have views on abortion. I just know what the law says. I'm not a big supporter of marriage of any kind in general. While I do believe that people should be able to enter any union between consenting adults they desire with the least state intrusion I also think the government should stop favoring married couples. I do believe in Republican principles in economy. And I'll say one thing: If I can come to America from Poland, push harder every day with nothing but myself and the support my family to go on I believe many more people can and should try harder and do better in this countty
Monday, November 5, 2012
Tomorrow Americans will be choosing their president. Politics screams out from every venue, every medium and website. I don't know about you, but I've decided I need a break. I'm tired of it and I don't even vote in this country. For this one day I choose to focus on the good things in life. What I like about living in America rather than what annoys me. Yes, people here seem to be flying off the handle as the day to decide comes, are probably more divided, angry and dismissive than I've seen before, but I'd like to remind you how giving, loving and open minded they can be. Especially in Florida. It starts with wishing a stranger a good day. A friend from Washington DC observed that back home he wouldn't dream about saying a word to a person he didn't know or starting a conversation on a bus. But then, I had similar sentiments after living most of my life in Warsaw. Everybody is distant, everybody is angry, nobody looks you in the face. It's only appropriate to interact with those in your circles. Work, school, friends, family. Isn't that limiting? Everyone feels so relaxed in Florida, I guess that's what they call Southern mentality. People pass you by and smile asking how your day is and smile. You smile back and respond. Do they really care about how things are with you? Probably not. Every day I smile and nod at more people than I can remember. I'm not going to lie, most of them don't leave a lasting impression. But for that one second it takes to notice another human being we're taken out of our little universe. Things we need to do, errands and shopping lists. The sun is shining, it's a great day and you just had a nice exchange. It will not change your life, but it's a little boost of positive energy. Kindness- pay it forward. I find it strange when I read that a bus driver in Warsaw gets national press coverage for using the microphone to wish passengers a good day. Everybody is so used to them not wanting to be bothered, shutting doors on people, sometimes even driving away. In Gainesville I get a hello and thank you every time. How could you accept anything less as normal? I think I may have written about it before, but when my mom was in town a girl stopped on the street to compliment her on the street. This is America that I love. Where people are considerate and kind. Please don't lose it. Please don't get so caught up in your resentment of each other's politics that you forget what made you great. Because come Wednesday morning everybody will have to focus on mending broken relationships. No matter how this ends someone will be angry and there's just no good way out of this. So, for now, it's Tuesday. Smile at a stranger and relax. Have a great day everyone.
Friday, November 2, 2012
Few weeks ago I saw a movie that struck a chord with me and resonated with my own experiences in Gainesville. "Liberal Arts" - shown as my regular serving of independent and difficult film at The Hippodrome Theatre. A man not much older than me revisits his old college town not that much different from where I live today and establishes a bond with an opinionated, intellectual, well read 19- year old that could have easily been modeled after some of the people I've met. The difference of course being that Gainesville is much more than a university. While in the movie you've had to drive quite a bit to get anywhere outside of school I'm in an actual city. People live here and have for generations. The lead in the film seems somewhat immature, has a hard time letting go of his college experience. That's why he's bonding with the girl who is just beginning to discover who she's becoming so well- part of him wants to mentor her, part wants to be like her or relive his glory days if there were any through her. We find his idealistic recollection of his own college experience through art and literature that he's unable to let go of that is faced with the harsh reality. And it got me thinking about my friends and my own experiences. Yes, I do know people in their late thirties that seem not very much unlike him. They have regular jobs in the city, yes, but enjoy the younger vibe of the town. I call it the "Peter Pan syndrome". With nights of pubs and bars and clubs, "hanging out", no deep committed relationships to speak of the feel stuck in the moment. They could easily move anywhere else, with their skills and mindsets be a great success everywhere they set their eyes on, but they are here. They choose to be surrounded by 19 yearolds, although, trust me, at some point it will only make you feel older, and there doesn't seem to be any end game or any progression. There is only today. There is only this month.
My reasons for coming here were of course different. I was looking for a place where I could not only function and exist, but where I would be liked and accepted. I didn't really have a lot of real life friends before I moved here or many opportunities to meet people. I guess I needed somebody to tell me, you have Cerebral Palsy and that's OK. Meeting those 19 year old kids that were very young, but very open minded and passionate helped me accept myself, because they were accepting me.Not unlike the girl in the movie they were well read and opinionated. Later you discover that it's part naivety, part self created, projected image. Intellectual critic is an attitude just like the hipster fad. But it's what I needed at the time. I also wanted to experience... something. This sense of community, of inspiration that I've known from American films. I've never had a college experience the way people here know it. I came from Poland, I lived in Warsaw, with my parents all through university. I wanted to make memories, I wanted a place where I belong. As a sidenote, I think the movie producers gave this generation too much credit. There are not that many articulate, deep thinking "about things in life" kids that I've met out there, but those that I have did seem very much alike. The movie left me with a quote that I just can't seem to shake off. A prison is anywhere you can't leave. That's how I feel about Gainesville sometimes, waiting for my next big step. Because part of the American way of doing things seems to be,you move out of your hometown for college, you travel a lot, you spend a big chunk of time in your car, you're here, you're there, you meet people, you stick around for a bit, but then you move on
Wednesday, October 31, 2012
I hate watching myself on video. In any recording I don't recognize the man I see and know from the mirror. I guess it's true that a camera adds ten pounds. My face is rounder and I look heavier. There's a strange intensity in it that make it seem strained when I speak. I look angry or sad, especially when I'm tired or nervous. What's wrong with my eyes? My voice sounds different than I hear it in head. I like to think it's just one of those things I take after my mother, you can barely recognize her on the phone. Whose facial expressions are these? My spasticity is far more visible that I give it credit for every day. I look swollen, I really want go back and correct my posture and how could I leave the house with that hair. And yet, pushing for disability causes requires me to be public to an extent and come to terms with the fact that I how I see myself and how others see me may be completely different things. Being public requires me to come to terms with how I come across. I guess we all think of ourselves as smart or fun or articulate or attractive to a degree. I may have a disability, but in my mind I see myself as everybody else. When I was younger, this external, unbiased look felt difficult to accept. Now I just say to myself: This is me. I can't do anything about it and I don't have the time or the energy to deal with silly small issues. For a few days journalism students were following me around Gainesville and did a swell job chronicling my life story. And I could spend days picking apart what I don't like about my look or I can focus on the message and ways I want to help the disability community. Sometimes we need to get over ourselves
Monday, October 29, 2012
I live next to a theater that puts on stage shows as well as play movies. It's an old post office building that is now famous for indie and European cinema and small cast musicals and dramas. I'm there quite often, not only because it's the source of entertainment closest to my apartment, I also enjoy experiencing something different. I try to never miss a play, in fact I'm an annual subscriber. Every Wednesday I buy a ticket for the film, regardless what is: documentary, foreign or one of those features that seem to end in the middle of a scene. But a building like this, as historic and atmospheric it may be. has a number of accessibility issues of its own. The biggest problem I've discovered so far was the restroom. When nature called I discovered there were no grab bars in the cabins and just like back home I had to manage leaning against walls and looking onto the toilet base for support. You never know when years of Conductive Education that taught me to adapt and use the functionality of my body come handy. Then I learnt that there are wheelchair accessible toilets in the building- in the ladies' room apparently. I was so told. I wouldn't know- I'm not a woman and there is nothing that would inform me about it in the men's room. A really tight manual elevator takes me to the main stage floor. It's one of those stylish old things you see in the movies.The attendant has to align it perfectly with the floor level. Sometimes this involves going up and down multiple times often with the production just about to start. The audience is sited around the stage, from three sides. When the floor manager knows I'll be watching the play he or she removes a regular chair in the front row and I simply roll into that spot. Last week my arrival somehow wasn't noted in their system so it delayed things a bit. Trust me, it's not a good feeling when everyone is waiting on you to arrive. So many things are involved with the mechanics of accommodating a wheelchair especially in a building as old as this. People who walk don't even realize how many people are involved so I can have this experience while they simply go up the stairs. It starts with the ramp outside, not only because of how steep it is but also given that local bikers have been using the bars on the side to secure their two-wheels. It's often scary and dangerous when the handle bars stick out into the ramp area, as I go down trying to squeeze myself through the opening and I've written about it before.
Could it be that solution is as simple as letting people know? The Hippodrome put a piece of paper saying " Handicapped ramp Do not block with bikes" on the grab bars. Nothing fancy, yet when I was there it seemed to have worked. There was no bike in sight. No one was threatened with a law suit or fined. Nobody was towed away. All it took was a printed warning. And the box office clerk said they have a few spares just in case. The message is simple:"This is not for you". And so far it gets through. Maybe people just need to understand. As I was going home with my new found faith and hope for humanity, two bikes were blocking the concrete path to my apartment.
Old buildings are difficult to deal with when it comes to making them wheelchair accessible. And quite honestly a lot of places in New York or DC don't bother. At least I can get in. At least they try. I remember times in Poland when going to see a play or a movie presented a big challenge. My dad had to pull me up with the chair or carry me up the stairs on those few occasions we decided to go. As long as I'm in, compared to this I can deal with anything
Friday, October 26, 2012
I could never match the expectations people have when they meet me. Quite honestly I have long stopped trying to. The image that they have when they hear or learn about me is never the complete picture and for many it is a problem. You learn about my disability, my wheelchair, my struggles, my fight and my plight, you focus on one aspect of me and you figure you know what I'm all about. I found it strange, but painfully reminded of it in this election cycle as well, how we choose to reduce others to those one or two things that they are like they are poster children for causes. We assume we know what it's like to be other people, how they should feel, what they should stand for and what should matter to them most. I've dealt with a lot of serious issues in my time. Life with disability is no laughing matter. I've faced surgeries, pain, self doubt and exclusion. Since I moved to America, I've dealt with a lot of rejection, misunderstanding and neglect. I've fought for disability awareness, accessibility and things like my own law school and immigration. And I do think about those things plenty, I tend to over-analyze and I share my experiences on my blog. Before that I've had stories written about me in the local press. None of it is manufactured and I have a lot of passion for things that matter to me most, but there's more to me. And I've had people meeting me over coffee because they felt inspired by something I have said and written wanting to get to know me, leaving disappointing.
They were expecting to see a hero, a champion of human rights and all they get is me. The idea is is that I always am this highly focused, deep thinking intellectual, branded by life experiences like some form of otherworldly being. Someone sad, somebody serious, broken perhaps? Sometimes you can just see I'm not who they've hoped to meet.Many times I've been told by people they expected me to be different. That's why I don't even meet people excited to meet this media persona based on me anymore. In one way or another, if you think that's all there is to me, you're bound to be disappointed. And I don't think it's fair to put that burden on me. If I can make you understand disability, I will do it but it is not my job to live up to anybody's expectations and it's not my fault if you don't like what you see. The truth is, I have a wicked sense of humor and I like having fun. I'm sarcastic and I take after my dad. Back in Poland he had a very risque way he would joke and when I first got here I found I'm very much like him to my own surprise. I've had to tone it down since. Humor to me is the most basic way I relate to people. Think about it. What an awful existence it would be if I just contemplated Cerebral Palsy and how I'm excluded from the world on daily basis. I'm not good at forcing conversation and I don't feel well around those who are square.
Having said that I'm serious and driven when I work and I always try to be respectful and mindful. Back in the law school I used to dye my hair blond and my mother would be concerned about my image. And to an extent she has a point. But if someone is not going to hire me or not like how I come across it will not be about my hair color or if I shaved that day or if I wore a tie that day honestly. Because I'm already different and I stick out. And I don't want to go through life apologizing for who I am or that I'm not as you pictured me to be.
Wednesday, October 24, 2012
People always ask me: "Why are you wearing gloves?" That's the one accessory you will never see me leave the house without. If I cannot find a pair that matches and I'm in a real hurry, I just grab whatever right and left ones in seemingly good shape I can find. I use them for protection as I roll. It's sounds like a very obvious thing to say, but I subject my hands to a lot everyday. Over the years I've had to give up on my dream of becoming a hand model (kidding of course) as calluses and corns formed everywhere. Even before I finally settled in a wheelchair many years of walking with sticks in legbraces caused me to develop some really hard skin on my palms. At the age of 10 my hand felt so rough to the touch as if I worked at a coal mine all day. Before I wore gloves, I would irritate or cut my hands from either grabbing the bar while the wheels are rolling or the continuous friction. They would turn red, sometimes bleed from the constant exposure to the tire. When I go up a hill, I push hard and grip tightly, when I go down I pull the wheels with my hands to slow it down. My right hand, the one that is more affected by my disability, is probably not aligned properly to come in contact less. I used to wear biking gloves. But if I didn't place the fingers correctly I'd end up hurting and whatever parts of my hand would stick out were getting dirty. I needed a full glove, and none of the ones on the market today last me very long. But I manage with what I have. Gloves became a regular part of my wardrobe and my mom sends me some of the fancier types from Poland. You wear them like other people do shoes, she says- they need to be presentable. But then nobody goes through a pair of shoes every 6 to 8 weeks. They tear usually under the thumb which is where I push onto the wheel the hardest. A little worn out area that just gets bigger until my skin is seen through a hole. Sometimes, because of the hot and humid weather the inner material reacts with my sweat and leaves a residue. On other occasions they just split at the seams. Football gloves, batting, climbing gloves were never designed to sustain such repeated abuse. Even the advertised Four season wheelchair gloves didn't last me a full one. There are pairs that I use on special occasions that fit with particular outfit. The ones golfers use are too delicate to roll outside, but they are white and clean and feel appropriate with a suit. The right ones I ruin quickly, the left ones I typically lose. Left hand is the one I usually do things with so I take gloves off for comfort and better precision. The thicker ones sometimes give me a better grip, but are much hotter to wear and feel clumsy. Every new type, every new thickness takes some time getting used to As I sweat and they get dirty I need to wash them, which is not the best thing to do if they are leather. .After I do many of them, irrespective of the material feel different. Tighter and harder. I have a box of gloves in my living room that either have a hole in them or missing the pair. Yes, because of that my friends have called me Michael Jackson before. But you can never understand what my hands go through without looking at the gloves I'm wearing. When somebody asks me why I do I ask them to take a look at how tor and splitting they are and imagine they are my hands