Wednesday, January 30, 2013

This is America: Immigration and disability

I've made a  mistake of wanting to make the trip to the Jacksonville Immigration Office by myself  once.  This was maybe three years ago. Finding a ride was always a problem for me. Somebody had to sacrifice half of their day driving back and forth, waiting until they took my fingerprints and the appointments were never set for early in the morning or sometime in the afternoon, and they were mostly in the middle of the workday. I figured this one time, instead of calling all the friends I can think of, asking, pleading to get them to take time off work on a very short notice to take me to a place about an hour and a half away I could do it myself. I took a shuttle from Gainesville to the Jacksonville airport, because that's where they drop you off and from there I called a taxi. But from there, my problems only started. They were not ready for someone like me to arrive at the center. I guess they don't see people with disabilities there very often, especially those of us who are independent and get  around without a guardian or a caretaker. I came to Jacksonville by myself. Nothing but me, my notice and my cell phone wallet. They were used to people arriving in cars. The drill was very simple. You leave everything but your documents and your keys in your car. My problem was I didn't have a car or anyone to leave my belongings with. I couldn't leave my cellphone at home. I was in a strange town, in a wheelchair and vulnerable. I needed it in case of an emergency and to call a taxi to take me back to the airport. At the spot I've learnt that if I was to make the appointment I was summoned to, I was not gonna be able to take my cellphone or my wallet in with me and there's no deposit I can leave it with. I could see how the electronic device might have been considered a safety issue- who knows what something masquerading as a cell phone in reality may be- perhaps a trigger- if their solution wasn't for me to go bury my belongings in the ground  right in front of the building or hide it in the bushes. Yes, you read it right. I was told to throw my credit cards and cell phone into the ground in front of Immigration Center before my appointment.  Security guards have given me a plastic bag so I would find them later.  Immigration reform  discussions take center stage in Washington this week. I wanted to bring up an aspect that not too many people think about. What happens when immigration and disability issues collide. We think of America as an embodiment of disability empowerment and accessibility ideas. At least in theory. Americans with Disabilities Act and its various state incarnations could serve as a model of inclusion for many countries worldwide. You'd expect governmental buildings and programs to have proper programs and procedures, to be mindful of people with special needs. But you couldn't be more wrong. When I went to the USCIS building, I got a feeling they were not very mindful of people's needs, period. This is the scene I witnessed. An Asian man enters the building. He is instructed by the guard- go to the wall and read the instructions. There is nothing in the said instructions other than pick up and fill out the form. The guard of course could have told him, pick up and fill out a form. but instead he was dismissively sent away to the wall to follow orders. The man had hard time understanding what he was and was not allowed to take in as he was struggling with English. That prompted additional dismissive remarks. The guard, instead of assisting was issuing commands and it felt to me that the point of that whole exercise was to establish a particular rapport, a submissive role when you enter the building. Every time you file for a change of status with Immigration you get a notice to have your fingerprints taken. It's automatic- mine must change every year, because they made me go four times, I believe. Every ride meant the trouble of finding someone willing to make the trip. The date and times were set by the office, you my ask them to reschedule, but again, you have no say in what they set it to. If you don't go - you forfeit the application. Some of the dates they picked were so soon there was no way I would have somebody take me on such short notice. If I wrote them about my disability and hardships they would give me a few extra days. They have never offered to come to me, meet me anywhere closer or spare the trip since they've already had my fingerprints on file with my prior filings. They have never made any accommodations or arrangements to help me get there  or assist me at the building. The real drama was the actual fingerprint scanning process. My right hand is spastic. My fingers get stiff and I guess they don't get the right impression on the surface. Pressing and rolling was a challenge. We've had to do it again and again, because the system just wouldn't take it in. With every attempted I got more stressed, tense and tired, especially since the system was higher than my arm level. Another thing that was not designed with people in wheelchairs in mind. And this is nortt a left versus right problem. This is also not something that George Bush left behind. The last time I was ordered to come to Jacksonville was 2010.  But is it really that surprising? And  Consider the fact that American embassy in Warsaw, a governmental building, a representation of the country has no wheelchair access at all. Something that should be inviting and speak of inclusion, something that says "This is America" had flights and flights of stairs people had to carry me over to get my visa or to participate in a moot court competition. But maybe now it's time to do something about it.

Sunday, January 27, 2013

Dark and lonely place

When my parents came to America for my graduation three years ago they saw me broken. Broken, defeated, lost and scared. Every trip to the mailbox was a terrifying  dreaded task, a routine I would do every day. Turning the key felt like a ritual I needed to brace for. Like a painful injection or an awful tasting medicine, something you know you'll have to do eventually, but you really don't want to. If it's there, it's there- the rational part of my brain would say, but any excuse to put it off would suffice. No word yet? I guess it buys me another day. Why is this happening- I would ask myself every day. Why can't I convince these people? Does it make sense how I'm struggling, nobody seems to get me at all and truth be told I have begun to second guess myself as well. Why am I pursuing this, if clearly they don't want me, if nobody can see my worth, well then maybe I am worth nothing. Three years ago I was waiting to hear from immigration. It was a dark and lonely place. It has changed me. I arrived in America as somebody determined to turn his life around. To be happy. To be fun, sociable and curious, to reinvent myself in ways I could never be in Poland. I was here always legally of course, I came in as international student on a visa and never violated that status. Then, I wanted more. It felt like somebody showed me this bold new world of opportunity, but then was to cruelly yank away from me. James Klausner, a UF professor and a Director of a local cerebral palsy foundation heard my story and saw it as a chance for the both of us. I guess it was pretty rare  for someone with my disability, with my extent of disability to be as independent, as driven but most of all as functional. He offered me a job and I accepted. He felt my story can inspire parents and children, while my advanced legal degrees where something his organization could actually use for the new programs he had in mind. I felt like I had a new lease on life. I won't bore you with the details of our immigration strategy- what were some of the things we filed for and what were there responses. I was denied. Again, again and again. Today I have a green card and everything is solved, but those months of second guessing myself and being angry, angry at myself will forever be with me. And forever I was changed. I feel I will never get that carefree person I was when first got here. It took me many weeks after it was all resolved to sleep well again. Back then, I'd wake up in panic in the middle of the night. It wasn't anything specific,  it wasn't just one thing, it was something indescribable taking a hold of my life. And when you're so stressed, so stressed for so long it becomes your lifestyle. Getting back to reality is challenging as you try to remember how you used to be and feel before it all happened. I got my green card, it was as easy easy as somebody signing off on a piece of paper to undue all the fear and doubt? Consider how you have to worry about your future, how your fate is determined by someone who has never met you. You will never meet them, you will never learn their name, just a number. What are they thinking? Are they getting what you are about and trying to do? Do they read into these things or do they just want to get through the stack on their desk by lunchtime? Immigration is hard for everyone as if trying to figure you own life out wasn't difficult enough. And for some people it may be too much to take.

 I've decided to bring this up for a reason. Not too long ago, I've met with a friend who also was an international student. Their situation was seemingly better than mine, but they were much more stressed and scatterbrained than I ever was. But a .lot of feelings and doubts I've recognized. Perhaps not everything as it felt to me that they were already drifting away in their mind, but then it hit me. How a lot of the internal process of being a foreigner in America trying to figure yourself out must be common to a lot of the international students. How they are things your American friends, as sympathetic as they are and they will nod their heads will never understand. You feel really abandoned in this and your mind is a really lonely place. How you feel guilty, that your here, your family is over there, you don't want to see you struggle so you put on a happy front when you call home always. Is it fair to burden them with your tuition and living expenses just because you have a dream of going to school somewhere. Shouldn't you be more together and not more lost? Are you not failing everyone for not having the answers? What are you doing? What is the end game. It's difficult enough living in a strange country, far from home. All this institutional red tape doesn't help. Your friends: they'll take you to parties, but they are not your family. Come holidays you are forever alone. America can be hard on anyone, even if we are not as culturally different. I remember going to the International Center all those years ago looking for somebody to talk to, a sympathetic ear. A bit of humanity. And I found it. "Just breathe. This is a safe place. This will all pass" the ladies would say and for that instant that's all you need. To think someone's got your back. My friend was Baker Acted the day after we met. Could this happen to anyone?

Friday, January 25, 2013

Disability: Homeschooling

As I was getting ready for a late Wednesday afternoon meeting, I decided to relax for a few minutes with my neglected friend, the remote control. A show on home schooling caught my eye. One mother pulled her child out of the public system because it was too gifted and quickly was getting bored even sitting on classes with kids twice her age. The other just wanted to give her son the power to learn whatever and however he wanted with no structured plan and textbooks. As I was watching it made me think of my own experiences growing up and the ever important role of parents in stimulating our curiosity, steering us in new directions and shaping our interests. I realized that I always focused on rehabilitation and exercises, but never on how and what I learnt. I was never technically pulled out of school of course and it's not that we were looking into alternative forms of schooling like  the kids on TV. But between ages 7 and 13 I was out of school a lot. First it was the Peto Institute in Budapest where I would go for many months at a time without visiting home. When I got older it was a bunch of other, full time rehabilitation programs in Poland often requiring me to be there not only 5 days a week, but also overnight. Somebody had to make sure that while I developed physically during the day, I didn't stay behind my classmates and what they were learning at school. To put it quite simply, my mother was in charge of my education. If you asked her, I'm sure she'd go back even further and tell you how she used to read to both her children when we were little. I remember my childhood favorites, "Marry Poppins" and "The Borrowers" and how she would change her voice speaking for different characters. When I was little, I wanted to be a writer. I had a big imagination and always wrote "sequels" to every book that I loved. But she would also tell you how concerned she was when I was smaller. For some reason I just couldn't grasp the concept of remembering  color names. "The ducky has a yellow beak and a green apron". What is the color of the apron? I just couldn't get it. And we tried again, again and again. I'm sure she must have been fuming inside thinking her son is just not that bright.  But we never gave in. I knew all the letters before I actually went to school. I've spent some time in a body cast from the waist down when I was 6 or so and my mom made sure I'm entertained, but in some productive way. Then I ended up in Budapest. At first my parents would alternate flying in on the weekends. And with them - school assignments. They had to crack open a text book and educate themselves on history, geography, Polish and math before they taught me. Going back and forth they had a reference point. Later, when my mom decided to stay in Budapest continuously for few months at a time, picking me up every later afternoon we read and studied every night. It was more of a  challenge I guess to try to figure out the right pace without any guidance. When I heard the folks on TV saying how having a parent setting a flexible education system I actually understood. My mom new how fast I was learning, what concepts I had a hard time grasping, what my sensitivity allowed me to do. I was familiar with multiplication table I think about a year before they covered it in class. I've learnt declension and conjugation while we were out on walks. My mom could be peeling potatoes and ask "How do you spell so-and so". I was better at writing than math, but still caught new ideas quickly. She'd check my homework until I was twelve. I was one of the first kids allowed to switch from a three line (large writing) notebook, to a single line one, like the upper classes. My handwriting was that well developed. Amazing if you consider I both had a neuromuscular disability and was (and still am) left handed. One thing though. Despite pressure, I never got to holding a pen properly. For the first seven grades, I've always had a high GPA with a "red striped" (for top students) diploma. As new subjects kicked in, like chemistry and physics, my mom educated herself some more. My parents also selected the books I should read and I read quite quickly. It was mostly mandatory literature, but also things they felt a boy my age should read. It's not to say that my mother wouldn't lose her patience with me sometimes, but that's a different story. Every few months, I'd be home, I'd take tests and reconnect with my classmates. There was continuity.  If anything they must have thought of me as a novelty as they didn't see me much and were perhaps more excited to have seen me. I wasn't equally good at everything. Geography was always harder, because I have a poor sense of scale and direction. Working with maps, I always had to work with the same size and shape on my tests that I practiced on, otherwise I'd get confused. Perhaps not a thing for all parents. It was a lot of work.  That much harder I'd assume, without a background in education. But then my parents to put it simply knew children. Three law degrees later, I'd say I turned out OK.

Tuesday, January 22, 2013


Is it karma?  Monday  afternoon I was on my way somewhere, I think I was about to get a hot dog across the street. I promise you, I have crossed the cobbled road parking lot in my apartment complex many times before. A bit of an angle, my front wheels get stuck a bit here every time. It's a little steep so I have to lift my front while going forward. A few minutes before I was telling my neighbors that they cannot let their dogs roam about the complex. I don't care if it is Martin Luther King's day and they are grilling in the courtyard the need to supervise their pets. As I was leaving thinking how ungrateful people are for the free legal advice  I have given them, having no concept of what could happen and how they can be liable, I've noticed that my chair lost balance and started to flip over. I felt that I was falling slowly and there was nothing I could do. This is what you come to expect when you have a disability. You've had plans, you were going somewhere and then you fall, you get injured, you land face down in the mud, you cut something, you scratch something else, you end end up on the ground and then this new, unplanned situation takes over your entire day. I remember talking to a very experienced wheelchair user, much older than me, who recently told me, he rolled off the sidewalk I believe and broke his leg. And I thought to myself, with his years in the chair, how is it possible? But then I've done things like that before. Sometimes I wasn't looking, other times I was distracted, I missed something, overestimated another thing. Sometimes things just happen. When you're in a wheelchair, "sometimes things happen" a lot.  Once a bus lift opened slightly above ground in a muddy area, during rain. Some other time, I went straight instead of turning right for the wheelchair lift as I left the gas station store. On a different occasion a painted crossing on the street led me to believe that a curb ramp was there while it wasn't. What do you do? At that point your well being takes priority. You need to assess that you can move, that you're not injured anywhere, not bleeding and you have to situate yourself in your chair. I'm fairly mobile, I can do a lot of those things being on my knees and people trying to lift me often instead of helping get in the way. Let me tell you how you can assist me. As I fell back, I've hit my back pretty hard. It's a hard cobble road and I have a short back chair. For a few seconds I felt intense pain. Did I broke my spine? went through my head, because at that moment all my back muscles seemed to have given in. Then I realized that although I took a pretty hard fall, my legs and arms were moving so I had to had been fine. As I fell I leaned my head to my chest so I wouldn't hit it. Rolling over at that stage felt painful, so I laid there for a minute trying to gather energy to get my back muscles to cooperate. I got on my knees, I put the chair up and as I was assessing what I can use as my second point of support to balance off and get up a car stopped. Some people stopped and asked if I needed help. As the road and the chair was tilted, I've said: I only need your arm. But not to pull me up- to lean against and push away like a grab bar. One thing years of rehabilitation have taught me was how to balance my own body weight in situations like that. How do get things done, effectively, although perhaps not in the most pretty graceful way. My back burnt as I rolled on to the hot dog place. You really don't notice how much of an upper body work out riding in a wheelchair is until you're trying not to use certain muscles.  Initial pain went away quickly, although sleeping was a challenge. Turning, sitting up and down was painful. And although I'm fine, my back still feels like I took quite a beating. Hey... Things happen. 

Monday, January 21, 2013

Consider this: The day before the storm

Today is the Martin Luther King, the national holiday. I also hear that somewhere far away from my world the American president is taking his oath for the second term. Quite frankly, with my own life, the things I focus on, I don't even notice. Mostly, I just wanted to enjoy the last day of Spring in the middle of Florida winter, be outside in the sun rather than dissecting another memory or disability related impression. Today I wanted be in the now.We've made some great plans, I can't wait to tell you about it. Over the next few weeks I will have very few days that I can just pause for a second to smell the roses. Tomorrow or the day after the world will come crushing in. We will be making a big announcement and from that moment on it will be work, work, work and even more struggle to make it. But today is Monday. It's the day before the  storm and I intend to enjoy it. Before my life becomes a whirlwind of emails, phone calls  and commitments, before I tell you what it is, I want to tell you why. Consider this. For almost two years I've been writing about disability. The awareness, my life, my struggles, law, impressions. Yet the most popular post in the history of my writings is the incidental bit about the problems I've had with My Citibank card. The most read entries last month were about my new laptop (here) and my coffeemaker (here) with a movie review distant third. I understand that issues of disability, rehabilitation and inclusion have a very limited appeal. Perhaps there is little value to my writings if any at all, I certainly don't expect the world to take interest but it's a very interesting starting point. I do have my work cut out for me, maybe is insane. It will be hard work. But I also hope it will be rewarding and fun. Also, think about this: The   random comicon elevator video I took with my cell phone got more plays in the first 24 hours than the student film project about my life story in its first month.

Thursday, January 17, 2013

Somebody cares

Whenever I'm not sure what to write about next, my life surprises me.  I've written so much about accessibility already. About how some people deeply care, yet others often don't think but have good intentions. I have never, that I know of, had somebody openly, knowingly obstruct wheelchair access by blocking the entire ramp. I've also written about this venue before, so it's not entirely new. And the problem with bikers taking up space is not something I've never encountered. I have even had an editorial about it printed in the local press. It all happened Wednesday night. I was about to watch a movie, a weekly routine of mine at a local arthouse movie theatre downtown. It's an old postal/courthouse/bank building converted into performance venue. Not the most disability friendly place, but they do what they can. And it has a ramp on the side, with flights of stairs in the front. Over the last few weeks, ever since I've written about how bikes  put me at risk of being injured by the elements that stick out and get in the way, the problem was bring very well handled. Turns out, it's not the bikers that stopped tying their transportation to the the railings inside and out of the ramp out of newshound awareness , it's the staff that has been diligently removing them. But then, I have never seen a bigger display of complete disregard for the needs of other people. On Wednesday I found a bike, tied and set completely across the entire ramp. I struggled lifting it and moving it to the side, so I can actually go by and get to the building. The biker wasn't even a movie patron. As always they were just having dinner at a restaurant across the courtyard Take a look at the picture. How can you miss that it's a wheelchair ramp? It's for wheelchairs. So they can get in. Are you in a wheelchair? No. You're in a bike. But then, you're not even in the building, you're at Boca Fiesta. I came up to the Box Office and I told the girl working there my story. I also told her the story from the night before. I was at the local restaurant called The Top, waiting for the wheelchair accessible cabin, the only one inside. While I wait, and when the doors open a guy and a girl get in front of me and get inside. Then they lock themselves in for the next twenty minutes and I still wait to use the restroom. Because they can go anywhere, anywhere else. I can't. As they leave I say "I hope your quickie was worth it". The guy knows me. He's a bartender at a local piano bar. He just doesn't care. "A bathroom is a bathroom" he says. The girl later gets embarrassed and apologizes to me after a while. But as I told the box office attendee the story something amazing happened. She was upset. She was moved. She started crying. As her coworker started putting up notices that the bikes will be removed at a certain time, (there were already three more) I thought to myself, Wow. Somebody does care. There are good people in this town

Wednesday, January 16, 2013

"Cerebral palsy life expectancy"

A lot of people who end up on my blog want to know how long a person with Cerebral Palsy lives. Some variant of this question directs them from Google to me and I see it in my statistics. I found it shocking at first and I wondered how to proceed. Should I have ignored it or acknowledged the issue in any way? I'm not used to talk of CP as simply a mobility issue, but a condition, am illness that adversely affects my lifespan. For me it has always meant that my legs and a hand is spastic meaning I can't stand or walk without assistance and things like balance or precision require more concentration. So, I've decided to do a little research of your own. If you trust Wikipedia you will learn that CP on it's own doesn't significantly alter life expectancy.  Of course the lack of movement, the fixed lifestyle based on either constant sitting or being bed ridden can lead to a number of conditions later in life, but it's not really caused by palsy. To be honest however, there are much more advanced forms of my disability that I could ever imagine and I wouldn't dare to comment on their quality of life. I've read about a CP blogger whose name now escapes me who was deaf and mute and not mobile at all who recently passed away. In his final entries he was talking about other young adults with this condition succumbed to some form of pneumonia. He was predicting his own fate as he was mentioning that they all went to a hospital with infections and never returned. So I've decided to Google some more. I've come across tables that claimed to be a product of late 2000's study correlating life expectancy with different forms of CP. What really stunned me looking at the divisions that they made is that I really don't see myself in there. They jump from "moves head, roll over" to "walks". I'm not sure if I'm reading the tables correctly, but if I was in the former, I should have been dead by 30. The latter is expected to live till 60. I don't walk, of course, but I do much more than just move my head and roll over. I move around in my chair and out of it, I  try to squeeze a bit of exercise, I go from one side of my city in my wheelchair and back daily. I did gain weight when I turned 30 and I don't like it, there is history of diabetes in my family and if I were to be honest, my dad was diagnosed to have a genetic heart condition my brother and I likely inherited. Those are some real concerns I have as I grow older. The website further indicates that one of the recommendations for extending the life of a person with CP is eating a lot of fiber. I choose not to discuss it further, but it shows how little people compiling that data know about me. I don't have any digestive problems at all. But then, I try to move around. If anything, texts like this make me feel like some kind of unicorn, as apparently I should not be as mobile as I am with my type of Cerebral Palsy. If it's true, I credit my parents hard work, years and years of rehabilitation, but also my own drive and determination I take after my mother.

Sunday, January 13, 2013


My parents didn't know much about the Peto method when I first arrived in Budapest in the late-mid 1980's.  I don't think we ever learned or cared to investigate the theory behind it, what and how it was believed to have worked or who the man behind it really was to any considerate extent. I was there to exercise, to do my daily routines, rather than to dwell and  uncover the purpose and the meaning behind it.  I remember flying to Hungary for a weekend, a month or so before getting admitted for the first time  for something that seemed like a consultation or an interview. My dad hardly spoke any English. I remember there was a lot of signs, hand gestures and pointing. "My son no..." and then he made his hands "walk" on the table. I'd assume a lot of information and discussion, all the paperwork was exchanged with the aid of a translator from back home. But as we were there, very few details came up. All that mattered was I had Cerebral Palsy, they had the experience and were equipped to help. The Peto method was something recommended by other parents, word to mouth. I think it was Dr Sinczuk, who specialized in CP cases while having a child with that condition as well, that first shared the news of it with the group of mothers at the clinic and it spread like wildfire. But then, this is exactly the same way my parents tried all the other different methods that followed or showed up in between. Somebody said something and we were running on very little information, clinging to every ounce of hope. This is how my mom ended up doing a Doman principle training in Philadelphia and also  gone through quite a few bioenergy healers, a priest and a nun doing Japanese massage. This is also how we ended up considering a brain surgery in America to install some form of neuron enhancer transmitter gizmo under my skin. Theory was not really important. How crazy it was didn't matter either. What did is whether or not it would work. /I'm not exactly sure I knew who Peto was. I think for a while I even wondered if he had anything to do with the the Institute at all. The communist system used to name facilities, factories and institutions after famous party members, military "heroes" and activists. I do remember seeing his bust in bronze. Quite frankly, he might've  been a historic figure, but he wasn't there. His history didn't really matter, all that mattered was can I beat  Cerebral Palsy with what they do there. I mean no disrespect, but it wasn't until I've met some English speaking conductors that I've noticed how highly regarded and quoted he is by them and it wasn't until I've seen some Western facilities that I've seen a strong emphasis on the theory- not only what it accomplishes nut how.

 What I find extremely dangerous is seeing a lot of Conductors and other CE professionals stating with certainty what Andras Peto would do and how he would feel about certain things. I said  dangerous, because as the man has been dead for decades unless you conduct a seance, you have no way of knowing what he would do. You also can't predict if, with advances in science and rehabilitation and the understanding of the human body his own views would not evolve. What he had access to in the 1940's might have been quite limited compared to what we see today. But mostly, even if he said or believed something, it doesn't necessarily mean, he was right. Yes, it was his method, but times and views change. In science everything is subject to peer review and critique. The biggest names throughout history faced the greatest challenges from newcomers and nobody was immune. "Peto said.." and "Peto believed.." simply cannot be the final authority on the topic.  Everybody can have an opinion, who states it can't make it any more or less valid. Peto's teachings are a starting point, an interesting man who lived in interesting times The danger that I see for Conductive Education is it reducing itself to those small closed off communities, raising the creator to a cult like status, that cannot be challenged, dissecting words and disputing semantics. Such  approach is not open to the outside world and not really helpful to parents, who want to try anything, anything that can help. If CE doesn't become wide open, it will never in my view be widespread. And it should mostly focus on convincing  the mainstream medical community that it is a valid option. To do this, it needs to be ready and able to submit itself to the scientific method. I remember when a Waldorf school opened in my Warsaw neighborhood. Mysterious and quiet, nobody knew much about it. Few trusted it. Few knew what went on behind the closed door. Shouldn't education be about trust and openness? What would Andras Peto say about this? That's the alternative.

Friday, January 11, 2013


If you want to listen, I will gladly talk. Apparently my numerous post on my years in the world famous Peto Institute and a lifetime of Cerebral Palsy  generated some interest. I've been offered an opportunity to speak at the World Congress of Conductive Education and I was  happy to accept. Between October 9 and 13 I will be in Munich. Perhaps there is some value to others in what I have to say, but I all I can share is how I felt, what I've been through, how it affected me and what happened next. Earlier this year our local Conductive Education Academy had no choice but close. It started years ago, because there were physical and mental needs of kids with Cerebral Palsy that were not being addressed, plain and simple. Not for the founders' glory. Now that the school is shut down, we are back to square one. We might say we tried our hardest. But is it enough for the children? When I joined the non profit that operated the Academy a few years ago I was told of all the issues parents of kids with special needs have had negotiating with school boards, placing the children in regular classrooms. Combining schooling and rehabilitation, but also finding an appropriately challenging environment for their offspring. What the school allowed the parents to do, outside of helping the kids everyday is give them a peace of mind. They didn't have to struggle on all fronts anymore. Without that school, same old problems reappeared. It really made me think about the difference it had made in our small community. It might have been Gainesville's best kept secret, but it made life easier for a lot of parents. I was at some fest or picnic a few months ago when a woman at one of the booths  stopped me. Her child was one of the students at the Academy and she remembered me delivering a speech at our annual fundraiser. It gave her hope, she said. She asked me for my card because she felt I'd be the one who understood. She anticipated a need for an attorney. It felt that without the school present things have  reverted to a state from before it ever existed. She felt her child was not stimulated intellectually, neglected and brushed aside. That the school doesn't know how to handle it. That she gets frustrated with the institution and the boards. Other parents felt the same and were having meetings about it. She never contacted me like she said she would so I don't know if she found resolution or not. But it gives me an odd feeling to think that all those years of hard work were just a temporary fix and left no lasting impression at all. They are struggling like they struggled before. We may say work hard, that we've gotten tired. That it's better to do something for a little bit than nothing. But children with Cerebral Palsy are born every day. And I'm sure they'd find little comfort in knowing we tried. We didn't really solve anything, did we?. That's why I'm still in this. That's why I want to do something, because something needs to be done. This is the first announcement I'm making. A bit delayed, with a bigger piece of news coming in the next week or two, watch this space for more

Wednesday, January 9, 2013

My new laptop

I did it. Last month I bought a new laptop. With the amount of work I have before me internet cafes and computer labs were not really a valid option anymore. I needed a solid piece of hardware (and software) I could rely on. My old one was a nearly 5 year old tablet PC from Lenovo. Long past its warranty it would often refuse to boot up from the hard drive and quite frankly there had to be more going on in there as often it would not even boot up from a flash drive with Ubuntu either. In the last month I've experienced so many system failures, I've attempted anything from restore to wiping in to factory settings I believe eight times and a few days later I'd had to do it again. My other option, an Acer netbook won't even allow any kind of repair of the Windows starter installation and is now only running Ubuntu. While it is a nice system and a nifty idea, I wanted something main stream and reliable. It was very odd shopping for a new device. It seemed most manufacturers have gotten rid of optical drives all together, at least in the lower pricing option. But I've decided hey, if it is to last me quite some time why don't I make it an investment. So between no drive, a basic CD-DVD combo I went for Blu-Ray- the thing of the future. I picked a nice support and warranty plan, as it is to last me quite a while. A big and sturdy laptop that feels like a desktop but can be moved around if needed. Solid parameters but mostly for functionality than gadgets. It did come with True HD and 3D glasses I don't really use, want or need, full disclosure. It was a 17 inch limited edition Dell Inspiron. One thing that really struck me, is that while it came with Windows 8 I had to pay extra for a downgrade to Windows 7. Typically I don't choose a new system until at least one service pack is available and I've heard mixed opinions. But I figured maybe a lot of criticisms has to do with habit and convenience. I'm not afraid of new platforms and solutions. We've had a ZX Spectrum, Atari 130 XE, Atari St, pre-Windows Dos, Windows 3.11, Windows95/98/2000, I've then had Vista, Windows 7 and a number of incarnations of linux. Let me say this again, I don't care where the Start menu is or if there is one if the system does what I want and is overall practical. The problem is, this one isn't. I've had a number of  hardware malfunctions 3 weeks after I got it out of the box. The hard drive started to make a clicking sound, like something was getting turned on and off. The system kept identifying it as an unknown device and crashing. Then, it would not let me go into the Bios or change boot settings so at least I can run Ubuntu on it. What I really liked was the Dell service. They came to my house. They replaced the drive and on the second day day they replaced the mother board they determined was to blame as well. What I didn't like is that they sent me a faulty laptop- the same type of issues I was trying to avoid and the reason for my purchase I was experiencing again. A new blue screen of death, this time with a sad face. And I'm not happy still. There's an odd white noise static sound coming out of the speakers when computer wakes up or when I use an audio playing software. The issue I can't replicate at will, and never seems to come up when I call tech support and the sound often is odd. The 3D Glasses look nothing like the description in the manual it came with, apparently for an older version and I'm not sure if I'm using it correctly, but the biggest issue is the system. Now again, I can understand going for one look or the other or choosing a new interface. But I don't understand why the Windows Media Player is not able able to play DVDs out of the box anymore and I have to use third party software. In a $1400 laptop I feel like I'm a beta testing an operating system. It is not 1995 anymore.  To defend it is progress is silly. It's like saying not being able to replace a battery on your iPhone is a good thing.

Windows 8 is using a new start  screen model called Metro with a bunch of applications providing ever changing live information in their little tiles. It feels like a cell phone. You click on  an application and it expands full screen.  The problem with this is, not every piece of software has a Metro version you can use like that. So, it feels like it's two system at once- underneath this new concept you have your classic desktop style that you can run your programs like you remember.

And it gets really odd- While Internet Explorer in the other mode acts exactly like in older versions of Windows- you can minimize it while listening to music on youtube and do other things, in Metro style IE- which feels like and is a different app all together- all the playback pauses when I switch to some other program. It really reminds you of the early days  of Windows when you could only do one thing at a time. But my biggest complaint is, this new system seems to had been designed  only with users of other Microsoft products in mind. As in to integrate it with your XBOX and your Windows Phone. My problem is, I don't have any of these devices and I don't intend to switch.  I have a lot of Metro style apps that clutter up my screen that would have been useful on my cell, but not my computer. Games, sports, Travel, stocks? And then I have a hard time finding those that I would find useful.  Metro would be fine concept if all of my programs could be seen as "live tiles" if I could resize them at will or run a move on top of each other. The other issue nobody seemed to have noticed- the new interface is designed with touch devices in mind. If I could point, swipe and move it'd be a much better system to use.  But my laptop, my new 3D display HD laptop is not a touch screen gizmo. And that is fine. I'm used to mice, trackpads and touchpads. The problem is my system wasn't designed to give me the best, most efficient experience. It's hard to navigate if you can't just do a simple on screen gesture. Windows 8 makes me feel like I should upgrade already. No wonder Windows 7 was the pricier option, a faulty system on its own. Am I a happy camper a month into the experience? Sadly no

Sunday, January 6, 2013

Being human

We tend to see people with disabilities as individuals with moving and inspiring stories. Strong willed, facing the outside world that often fails to understand and care. This is such a simplistic view- as always there's so much more to a person and reducing them only to their fight and plight isn't really helpful in spreading awareness and bringing understanding. People are more than ideas they front, causes they stand behind and obstacles thy face. Few days ago, I wrote an innocent and yet frank observation about my orthopedic shoes and yet it caused quite a stir. How dare I demand that the clothing and rehabilitation tools be not only practical, but also attractive. Why would I concern myself with such petty things as external attractiveness rather than inner beauty? How about because what we tend to forget is that I am human. Back then I was just a  kid. Even today I feel better when I dress nice, if I'm happy with my haircut or try something new with my facial hair. You'd think I have bigger problems to deal with, but there are moments when I can't let go of that bald spot on the top of my head and I try formulas and capsules to make it less visible. I'll admit it- I like being surrounded by things that are pleasing to the eye and I also like when people find me attractive as well. Because we all live in a physical world, not the world of ideas and the amount of trials, tribulations and pain doesn't change the fact that people stare you down and judge you from the moment you go get mail in the morning or go to the store to get milk. That's not to say I do it only for other people, I do it for myself as well. But yes, I'd rather people think "Wow, he looks sharp today" than "Oh, he's so brave". Like everyone else I have insecurities and wants and needs. Small things often lift my spirits.  Few years ago I used to dye my hair blond. My parents didn't like it- although they've only seen the pictures, but that really didn't matter. Something was happening to me as I was sitting under that cap and all the troubles seemed melting away. Remember my impressions after seeing the film "The Sessions"? The image of a paralyzed, polio suffering writter as a sexual being mad a lot of people uncomfortable. It seemed the less physically able he was the less he was allowed in public view to be aware of his physicality and have physical needs.If it was about him fighting for a ramp, social security benefits or fighting to publish a book against odds the movie would've met every audience's applause.

I remember visiting my cousin in Las Vegas when I was 19 and noticing that my twelve year old nephew had more jars of hair gel than I. That is probably the age when you start to pay attention to your physical attractiveness more- you want to stand out, be an individual, get noticed but also blend in. It was easier at The Peto Institute. We all wore the same style "uniforms"- t-shirts and shorts they provided. It was easier when I was seven, eight, nine or ten. It was easier, because it's easier to focus on things that should matter more when you're far away from the outside world at a closed institution. I've never thought about it that way before I've seen a few episodes of the HBO original series- "Enlightened". The heroine played by Laura Dern, a corporate rat suffers a mental breakdown and is sent away to a holistic inner peace program far away from the civilization. What becomes challenging is applying those lessons and skills to the unforgiving rush of modern life. When she again has to deal with people, deadlines and traffic. It was simpler when she could focus on the beauty of sea turtles and clarity of blue water. In a way I feel like that about my time at the Peto Institute. But there's more. I realized that for me and most of my friends are time there ended right before puberty. We were ten, eleven, twelve. The age that we not only pay more attention to our own appearance, but also start notice other- in the romantic sense. The time of first crushes. And that is also the age you start feeling more and more different. The disability becomes more and more noticeable. When it can't be buried or mitigated by the social skills of an observant caretaker or parent. It's easier when you're 10 to not think about the future, to not concern yourself with how others see you. I can't stop thinking, that perhaps the Institute could have given me something more going forward, a boost of confidence for my teen years. When I was nine and I played with able-bodied friends, the moment I got excluded somebody stepped in and steered the game in a new direction to bring me back in.  It's easy to deal with ten year olds. But adult life is different. If we could only be ten all our lives. At that age looking good and dressing nice had another layer. I grew up in Poland, where a pair of jeans, new sneakers were rare and highly desired. It was something that lifted you from the obscurity that the communist reality around us was, sad and gray. It was not simply an instance of going to the store.

Friday, January 4, 2013


It seems pretty obvious. The right kind of people can inspire and motivate you and make most hard work pleasant. The wrong kind of people can give you nightmares that will haunt you for the next 25 years. Some people should not work with disabilities, but then some people should not work with other people to begin with. As a discussion about a stimulating environment and how looking good has always made me feel a little better about myself evolved into a debate on inner and outer beauty, Andrew Sutton encouraged me to be more explicit and upfront about some spiritual experiences I have experienced. I've written about it before. I've had some pretty awful things happen to me when I was having surgeries in Polish hospitals when I was six years old. I was in a cast from the waist down unable to  move, at the mercy of nurses to bring me anything from a bedpan to water, and trust me you get thirsty. I called and called and no one would come and I remember being told to pee in the bed. Do you know what does to a person, being so hopeless and alone? My parents were not allowed to be with me other than on the weekends during visitation hours. The only human contact you'd have was other kinds, crying with loneliness and pain and the hospital personnel, who thought of you as a burden getting in the way of a smooth quiet shift. My mom was concerned about my spastic right hand and asked the nurses to watch it and adjust it. So they just tied it to a bed railing because they didn't want to be bothered. All these years later I still remember it today so you can tell it was pretty traumatic. First and foremost it didn't need to be. It didn't have to be as cold, mean and distant. A little humanity goes a long way. And I always wondered how do people get this way. Do you start with passion and compassion when you're young and full of energy and just disengage over time? Do you just see too much misery and pain every night over a period of 20, 30 years for a human being to bare? Maybe it's a natural human reaction to grow indifferent? Is it also because everyone around you acts that way too? At what point do you look at people like they are a sack of potatoes? Is it the power struggle? Is it how some of the patients are bed ridden and rely on you for everything and some of the tasks you need to perform are not pretty? Perhaps there's no love in routine, perhaps there's no compassion in having to clean up somebody who just soiled himself. Maybe one day I'll understand. I'm still surprised that with some of the things I witnessed or that happen to me I didn't spend 20 years in therapy. Perhaps it isn't fair to compare Polish nurses to Conductors from the Hungarian Peto Institute- Mostly young energetic women who were there guiding children with Cerebral Palsy through rehabilitation. Warm, loving and kind. I have never experienced spiritual ugliness there and it did allow me to heal. When you don't have to worry about being in pain and mistreated you can actually focus on growing confident and becoming independent.  But then, to be fair, they don't see  some of the things a nurse experiences. People after severe surgeries that are unable to move, needy, shocking and also aesthetically disturbing. I also don't know what happens if they spent 20- 30 years in a position or place they end up hating. Most women working with kids directly were younger. The older ones were there also but mostly to advise and supervise others. Maybe Peto wanted to harvest this youth and enthusiasm  as essential to his method. But do we always stay this way? How do you not lose the passion.I don't know what happens to  human spirit over time. I don't think we're born ugly.  Maybe it's something we become. But remember this: kids are impressionable. The ugliness I've experienced had branded and added to the trauma in a way it didn't have to. It was the human contact that made the whole experience so much worse and why?

Wednesday, January 2, 2013


I've decided to try something different today. I don't want you to get a wrong impression of me- after reading all I have to say about Cerebral Palsy, growing up with a disability, the traumatic experiences of my childhood, the years spent in Hungary, you may think that's all I ever talk about. In fact, before I started writing about it, although no doubt present in me it crossed my mind rarely and often it's my friends or readers who ask or provoke another post on the topic. You may think I'm very serious and focused all the time and while I'm very driven driven and mean business when I mean business, I love to laugh, I tend to be fun and sarcastic and I have a host of things I enjoy. While the image that the blog has helped me built may be helpful at what I'm trying to accomplish, it is also not entirely accurate. I've started this to show you that people like me can not only be educated and productive, but also  no different from anybody else. Quite a few people recently contacted me thinking that my recent posts seem depressive and that I need to lighten up. Then and there I decided that you really need to know more about me. From time to time I will write a bit about my passions. These include in no particular order, meeting strangers, grabbing drinks, karaoking although I rarely sing myself and coffee. Mmm... Coffee. Few things bring me more joy in the middle of a hectic day than a steaming milky drink with a shot of espresso. Getting out to Starbucks used to be a part of my daily routine until I realized I leave a small fortune there every month. I didn't like coffee growing up. My parents enjoyed a hot cup of the instant beverage a few times a day black, sweet and strong. When I say strong, I mean strong. It seemed to be half coffee, half water. As a child I always wondered, how something that makes such a great filling for chocolates and candies can taste so gross. As a young teen, I've enjoyed the roasted grain beverage Inka with milk, that was developed by the communist powers in Poland decades ago to emulate the taste during the coffee shortage crisis. Since then it became a popular family drink. On occassion, my mother would use regular instant coffee if we were out and that tasted fine. I didn't start drinking coffee on my own until one of the first chains opened up in Warsaw on the back of the Warsaw University Library and the Faculty of Law building. There was something about that hot drink with cinnamon and plenty of frothy milk with all the flavors that made me enjoy it because of its taste not in spite of it. It wasn't uncommon for me to spend 11, 12 hours a day in class with very little time to enjoy myself and unwind. In a crazy schedule you learn to enjoy small moments of joy, moments to yourself and crazy schedule.  In America, I discovered Starbucks. And energy drinks. More stress, more craziness. You will laugh when you read this, but when I was in taking my bar exam be in Tampa, New York or going up to DC I was lost, uncomfortable and lonely, but Starbucks seemed like one familiar thing everywhere I went. I knew what I would get and it looked pretty much the same everywhere I went, so for me it was the one place I'd go to get myself together and regroup. The energy drinks in the morning and late afternoon helped me power through. After hours of lectures a long break over a cappuccino or latte is something I looked forward to. Even till this day, first dates, catching up with all friend or business meetings happen over a cup of coffee. A close contender: PJ's a smaller, more intimate chain had a location next to where I have lived at the time with red couches and a New Orleans feel. Oh, for a few months there as I studied for the bar exam I was there every day all day long reading over a granita or a white chocolate cappuccino, sometimes they had to vacuum around me. Another favorite was Barnie's that had a number of coffee chains at malls designed to have that retro feel as you went inside. I'd go out of my way to stock up on their syrups, flavored teas, espresso mixers and a Holiday favorite- Santa's white Christmas. All of their US locations have been since bought out and replaced by Starbucks, but if I  get sentimental I get Santa's White Christmas online. The downside is the convenience of no hassle coffee making of having somebody prepare it for me is gone.   For the longest time, I've been looking for a way to repair my budget, because let's face it, you can almost get a sandwich for a price of a Starbucks drink these days. My parents have been bringing me Nescafe's instant espresso powder, that is not available in America, but that's not a money wise method to get coffee either, although delicious. So I decided to look into one cup coffee systems, because I'm not a big fan of drip drinks. A demonstration of the Verismo system at Starbucks made me want to get something entirely different. Their milk cartridge had that fake powdered sweet milk taste that I didn't enjoy at all. I saw a few ads for the Bosh/Kraft Foods venture Tassimo. I liked that you can make hot chocolate, tea hot and iced, drip and espresso, so I decided to get it.

 Let me be straight: It's not for everyone. My machine broke on the first day. Was spitting out water and rebooting itself randomly for the next few days. Fortunately it got itself to a point where it makes some drinks (after destroying a bunch of cartridges), because three weeks later, my order for replacement is still "processing". The customer service mixed up my orders twice. I was promised vouchers and refunds but that hasn't happened yet.  On one occasion I had to explain to the second operator what the first one had told me, because he couldn't grasp the concept that with a backordered item, my order was split into two shipments and then I got the wrong type of coffee anyway. The email support seems to do nothing but tell you to call the phone support. After Christmas I was told I'd get a call back from the refund division, hasn't happened yet. I'm still stuck with Ice Tea in the middle of December, while I ordered a Tim Horton's latte set. Every time you call, you wait and you wait and then you're transferred to three different people all of which want a spelling of your name. But a bit about the drinks. The boxes come with 16 cartridges called tdisks. If a drink require a creamer, the set makes 8 cups. If it's drip coffee, tea or one of the chocolates, it makes 16. What is supposed to be so revolutionary about this system is that it reads the bar codes and knows how much water, what brewing time and pressure to use. It makes the drinks very quickly. But it's not the best system if you have a disability like me and you can't see the top of the machine and you operate it from below. It takes a bit of practice to put the disk in the right way because there's nothing in there preventing it you from doing it wrong. You put one disk in, you wait to brew, you may add more water manually and you put the next disk in.  The problem with creamers is they start to spill from the machine even before you start brewing and you end up with a lot of sweet stuff on the bottom. If you press to add more, there's no indication on it to tell you if there's cream or chocolate still left inside or are you just watering it down.  I have no idea how one would add an additional shot of espresso. I like my latte and cappuccinos unsweetened unless they are flavored. All of the milk creamer disks are sweet which I don't mind so much, but then a lot of the sugar ends up on the bottom. And you can't stir it. The point of making a latte is having layers. I know it tells you to shake the disks before use, but it doesn't really work. Some syrups are just to thick. It's a shame that they didn't come up with a system that warms up the disk and shakes it up before use. At first I thought there was nothing about the machine that I liked. The competition has solutions that automatically remove the cartridge. Here you have to take the little container yourself, and it's upside down and may leak some leftover hot liquid.  I hate how you can't adjust strength or sweetness Now I'd say I like the hot chocolate drink, the  cappuccino creamer, while the caramel espresso improves the taste of the basic latte creamer. I don't like the one design fits all approach for drinks, but unless someone is willing to buy me a Nespresso Latissma that uses your own fresh milk, this is going to be my personal cafe for the next  few months! :)