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.