Friday, November 29, 2013

The new Normal

My brother had crooked teeth when he was little. I know that he hated wearing his retainer growing up and that's why some decades later he doesn't exactly have a million dollar smile. My mother wanted to spare me that experience at least -although most of mine grew straight - some still could have benefited from a had to corrective device. But the question she had to ask herself was: is it worth it. The pain, the embarrassment,  the routines, the social stigma. And to what end? What would have been the benefit? Normal teeth, a problem that needed fixing but at what price? Does the goal justify the means and the costs? Is it fair to constantly be seen as a problem in need of addressing and fixing and for what, to be normal? Who says what this "normal" is exactly and why we all need to be "normal" in that one established way.
Andrew Sutton recently asked me to look over some very severely negative opinions  of the Peto Institute in Hungary, the facility I credit for the level of my physical independence and ability that echo that same sentiment- and which in my view are not exactly fair. The authors compare 1980's Budapest to today's New York city and say: they made us feel like we were a problem. An issue that needed correcting. We had be transformed, become normal, and who knows what this normal is anyway, while New York City finds new ways to adapt, include, be accessible for people with special needs. The accusation being that the Hungarian Government told the Peto crew to deal with the disabilities in the country to the best of their abilities. There are few things I find extremely problematic with these statements. First, I find New York City probably the least wheelchair accessible city I have been to in America. It is not a good example of how things have progressed. Much better than Budapest for sure, but if anything it leaves me depressed every time I'm there when I'm faced with all the things that are beyond my reach there and places I can't get into. Yes, I share their sentiments that living behind the Iron curtain had made me feel like I was a problem in need of fixing and every day I worried what would become of me. And I can't really contrast it or compare it with anything, because all I have known as a child in the 1980's was life in Poland and Hungary and they were in that sense alike. And you in a way get used to it.  But it wasn't Peto's fault. If anything it was the only one of the countless rehabilitation facilities I've been to that didn't feel like a holding place, like we were doing something constructive. It was the communist government that kept people with disabilities out of the public view. They didn't fit the description of the happy, care-free, healthy society countries of the Eastern bloc were trying to present. Traditional facilities like mainstream education were beyond our reach for policy reasons. All people like me had to look forward to was special schools and special manual labor work places like gluing dolls and putting pens together. Even if that wasn't the case, there were steps, stairs, everywhere you went. You simply couldn't get around in a wheelchair without some basic ability to walk up, even to get on the bus. And I feel first and foremost this is the basic problem that the Budapest Institute was trying to correct. I grew up with a notion that I will either be "normal" to the fullest extent possible or I'll work ans spend all my life at home when I get to heavy for people to carry me. But this wasn't something the Peto Institute taught me. This was the reality facing me outside of my window. For as long as my parents were around and had the strength to deal with me, yes I could have some form of a life, but what would happen next? Even as trends changed after the fall of communism in 1989, you couldn't rebuild the city over night to fit my needs. And changing people's attitudes takes years if not decades as well. 24 years I feel that Poland still has a very strongly communist like approach to its citizens in wheelchairs as well as citizens in general. Back home, in order to work, to be employed in any capacity you need to be cleared by a  labor medicine doctor and pass regular checkups. If you have a disability there are committees that deliberate, need to see you in person, look over your paperwork and determine your fate. In Warsaw I'm permanently unable to work and they prefer to pay me money to keep me home. In America I'm licensed to practice law in two states.
But before we go on about how inclusive America is and Europe isn't please remember that it isn't exactly fair to compare 1987's Budapest with 2013 New York City. Accessibility is a fairly new trend. Americans with Disabilities Act was passed in 1990. Before that US has as little clue as what to do about people with special needs as the Europeans. So the Hungarians did what they thought was best to help- To give people skills to try to help them exist in a wheelchair unfriendly world. And some of those I use every day, because often I'm in a position when I need to figure out how to get around a problem when a grab bar isn't there. Recently I wrote:
  "Not until I moved to America had I thought that there is another way to approach this. Not have me mold to the world's limitations, but mold the world around me so it can have less limits. In that sense I started to think of Conductive Education as a counter movement to the American accessibility trend. Yes, Peto says to try, to fight, to be the best that you can, but it seems that he's essentially saying change the individual, because the world will not change for him. And in that way, while I gained more ability and just enough to function in America, I do think it conditioned me to accept the world as is and expecting less out of life often feeling inadequate. Americans are getting rid of stairs, putting in lifts.  You can get around more and you get to experience more in life. But they also sit the children in wheelchairs early, don't promote developing the physical abilities, mobility, body awareness to that extent, elements I find useful even as I live in more accessible Florida. In my mind, both need to change, grow and adapt- the children as well as the surroundings they live in."  
Now I think that the proper approach is both and the truth is in the middle. Change what you can, adapt to what you cannot. Being fit and able is still useful in a host of situations and perhaps it's my ability to get things done for myself is what amazes people when they see me living, working, traveling by myself

Sunday, November 24, 2013

A boy and his dog

It's not that we didn't have pets when I was little. My brother apparently sun-dried his crawfish when he left the container on his desk by the window in direct sunlight. I'm not sure if our hamster "escaped" as my mom later claimed, I have as strong suspicion that she met her end inside of vacuum cleaner "The Wonder Years" style or that someone forgot to fed her. We also used to have an aquarium in my brother's room. I'm not quite sure where that went, I only remember how it was gone when my parents remodeled my brothers room. I was young at the time- but I recall that feeding the fish or not feeding them was a big issue in the family and I saw some jumping out of the tank. The hamster on the other hand was some kind of project at my brother's school where he traded a plant for the animal. My cousin Grazyna had a dog all the kids in our family loved. He was pleasant, warm, never bit or barked, social, furry and white. You could not separate him from her and even as my aunt yelled at her he'd jump in barking to protect her. At the time we believed that Endi was a poodle mix, now I think he looked more like an English Sheepdog. It was funny how I scared of most other dogs as they came by but this, this one I loved. I remembered how one evening when visiting my aunt I talked my parents into "borrowing" Endi for the night. He knew us well and he's been to our house. Without my cousin there he got extremely homesick and spent the whole night at the door squeaking and barking and would not come down. That was love. When my cousin got married and pregnant and moved away, she left her dog behind with her parents. When I asked her why   she said she grew out of it and now she needed to focus on her child. My uncle told us years later, that while walking Endi somebody just grabbed him off the street into their car and he was never seen since. I was twelve when I got my very own dog. Well, not really my own, because she seemed to love my brother the most. She was a mutt. Tiny black thing, resembled a dachshund. She loved people. Always running after strangers to lick their shoes. At first she slept in an old cardboard box but grew out of it quickly. If you left her with kids, she'd have the time of her life. She wouldn't eat lunch meat if you just put it in her bowl. Wasn't a fan of sausage either. She didn't trust most things unless it was something she saw you eat it first. But if she heard the tearing of a candy wrapper even from the other room she was right there to hypnotize you with her eyes and get you to give her a bite. That was also when she'd try to perform all of her tricks at one. Giving paw while begging is something to see. You didn't want that paw? She'd give you the other. Or play dead. Every stranger who passed our doorstep was an instant friend and she loved bring the keys to and from the gated door that cut off part of the floor our apartment was on. Through the night she'd visit any bed with a person sleeping in it she could access. My brother and his girlfriend would often take her with them into his room and she loved that as well. You could say she wasn't that attached to us, right? Wrong. When my brother's girlfriend "borrowed" her for the night to keep her company she wouldn't leave the door or keep quiet. The dog demanded to be returned and was returned that night as if it was an emergency. It was odd to see other kids with Cerebral Palsy freezing up in her presence as if I brought a doberman. That's how I used to react and sometimes still do- with other people's dogs. She never had a good sense of smell, but had a good memory. When asked to search for something- and she recognized a few names of items, she mostly remembered to go look were things usually are. She loved water and to bathe. On a few occasions she even attempted to jump into the bathtub with us. She wasn't much of a fighter and mostly feared other dogs. She just had to be included in some of our exercises. When we would throw the ball around to help me develop precission and skills, every now and then you had to throw it to her, into the apartment.  Sawa's health first started to decline when a rottweiler bit her and she ended up getting stitches. She also developed some back problems walking up the stairs and few years before I left she had some internal organ issues and refused to eat for a bit. But then she got better. And then, just like my cousin I guess I moved on with my life. In 2004 I left Poland. My parents didn't want to worry me when her issues and older age really started to get to her. She wouldn't eat, she wouldn't drink, she had a hard time walking. My mom started cooking vegetables for her as if you would for a child. That was the only thing she'd swallow. She developed a system where she'd stock up on home made food for her, days in advance. Some days she seemed to get better. But later she barely moved. She had a hard time keeping her food down and she had to be carried outside. I didn't know what happened until months later. My parents took her to the vet one more time expecting treatment, hoping there was something they could do, but they never came back with a dog. The vet decided the best thing to do is to put her to sleep. My mom  told me the heartbreaking story of how they came back to an empty home with jars of food cooked for Sawa waiting. And they didn't tell me. I guess they didn't want to stress me. Back then I was set to take the Bar exam in New York and I was fighting for my law school admission in Gainesville

Friday, November 22, 2013

Pumpkin season.

I like November in Florida. First batches of eggnog hit the stores, pumpkin spice becomes everyone's favorite coffee flavor until late December. Those few weeks between the care free oddity of Halloween and the biggest American family holiday- Thanksgiving Day, followed by Black Friday when people trample each other in stores to get a discounted toaster. On some days it gets just cool enough to wear a sweater or a vest, to feel that fresh breeze in the morning, but not too cold to make me wonder why did I ever leave the house today. It's different, it's a bit of a change. Usually we have two types of weather here. While it's mostly hot and humid, we get cold fronts from time to time, especially towards the end of the year. But we never seem to have anything in between. It can rain one moment and then everything feels dry an hour later. I like late Fall in America, because it has commotion and excitement without the pressure of Christmas. Seasonal drinks hit your favorite cafes, but not to worry, it's not December yet. I don't even know what a pumpkin spice is- is it meant to taste like pumpkin or something you add to pumpkins, but I love it. Recently I even discovered a limited edition pumpkin spice kefir in the dairy section of my grocery store, which made me think, Wow, Americans really add it to anything. I also must confess I ordered 40 servings of pumpkin spice late for my one cup beverage system. I thought to myself- this better taste as good as the one sold at Starbucks or I'm looking at a long season of drinking coffee that I don't really like. November and early December are as close to us having a change of seasons as we are going to get.  In only few weeks I'll be reminded that I don't have a family in this country, that I feel like I belong- but not really. For Thanksgiving most of my friends will travel cross-country to be with their families. For a day- all public transit will stop and most restaurants won't deliver. This is a college town for the most part- so as soon as the exams are over until January- Gainesville will turn into a ghost town again. Even on the days that buses will run, they'll cut down on hours and service area. Christmas Day, Thanksgiving are really the days I sleep through. Thankfully Americans don't celebrate too much. All they get is the one day of Christmas. In Poland- you get two. With Christmas Eve being the fancy family feast. New Years Eve is not much of a celebration in Gainesville either with the college kids gone, some people in clubs and the downtown countdown using confetti instead of fireworks at the party shutting down promptly after 12.  And once again I will be left with my thoughts about what I'm doing here, where I should be instead, how I miss home, how everyone just leaves me behind in this town and what my grand plan should be. Do I even know anymore? But for now it's November. I have to say - that pumpkin spice latte sure puts me in a good mood and I can worry about the million calories per cup on another day.

Tuesday, November 19, 2013

Cerebral Palsy parenting

I guess you never stop being the parent of a Cerebral Palsy child, no matter how old the "child" may be. Perhaps it has more to do with being a parent in general- and having a son or a daughter with special needs- only enhances it. And no matter how much time passes- you still feel the need to be there, you still want to help. This was one of the things I realized when I was back in Poland with my family. I moved away from home nine years ago. I haven't been back since 2007. I haven't seen my parents in a little over three years. I live by myself. I haven't had a roommate in ages. And I get by.  I don't have anyone helping me and I survive. And yet, when I got home it felt like my mom wanted to assist me with everything- when I stood up to transfer myself she'd attempt to grab me, often interfering and kind of getting in the way. Frequently checking if I didn't need anything and bringing me things I didn't ask for. My sister in law told me that they even were worried what would happen if I woke up in the middle of the night and I was hungry. She of course told them that I surely knew where the refrigerator was. The odd thing was my mother was never the overbearing type that wanted to do everything for me. I really don't remember that much attention growing up. But then, I thought- the must really miss me.  And this is how they express their love. They have not seen  me for the  longest time, who knows when they will see me again so they cram as much affection and as much attention into the short few weeks we have together as humanly possible. And I didn't fight it as much as I would normally when someone tries to rearrange my shirt or comb my hair. I figured, hey I'm not home enough, let's just enjoy each other's presence. Truth of the matter is, as much would want to my parents are not actively involved in my day to day life. I do God knows what with God knows who and they only hear bits and pieces of it  if I remember to Skype home once every two weeks. And often there's not a whole lot to talk about. Sometimes I get excited about a project or a job offer or a speaking opportunity that blows up the next week, so I don't even bring up the small things anymore. Over here I have plans. I have dreams, I have friends and plenty of stress, but then my parents are not versed if you will in my day to day activities anymore. And I'm happy that my parents have their own lives, jobs and grandchildren that they can give their time, focus and love. We are not very good at verbalizing our feelings, but my parents are very giving and loving people. Last month I was in Munich, speaking about my life with Conductive Education and Cerebral Palsy at the World Congress and I brought my parents along. There weren't many ways they can have an active presence in my life but they wanted to make sure I looked good and had one less thing to worry about. The three suits I sported on different days of the conference- that was all my mother's work. And then when I was sick- half passed out on my uncle's couch in Munich - my mother shared with me that whenever she sees a child in a wheelchair she wants to run up and help. That's how much she misses me. That's how much she misses that interaction. To me, that moment was heartbreaking- because if I wanted to, and I would never want to- I could never be that little kid she used to care for again. Time passes, we grow. Sometimes we grow apart. And it got my to think how this new life that I got here, my new lease on life as exciting as it is for me, took something from my parents- that I never thought about to a greater degree. I was happy to get started- they were letting go of something, and miss it.

Sunday, November 17, 2013

Inspiration is where you find it.

Seven years ago I made a friend. Somewhere between grabbing a sandwich at Quizno's  for lunch and rushing for the last Sunday bus home from downtown. Through the years we were bumping into each other and catching up with stories from our lives through random meetings at places we both would visit often. Like last week- I was getting my usual hot dog with a side of chili and he was drinking a beer at a pub we both like. Not a person I've spent a lot of time with, not really someone I hang out with, but always present somewhere in my social circles and great to have a heart to heart moment with. You know people like this- you may not see them for months at a time, but when they do come back it's like they never left. And given that I live in a place where people never stay- a transient town of Gainesville he might now be my oldest friend in town, because unlike many people I've met around the same time he was from here. As we were catching up somewhere between his cigarette moment and his next round of beer I told him about my trip to Munich and the book I have out. He told me how inspired he was when I was not backing down from my dream of getting into law school again, how I was making the rounds, meeting with everyone I'd have to meet just to convice them of my worth. And then he said how amazed he was when he saw my picture in the newspaper. It wasn't simply a picture. You've taken the whole spread! He remembers sitting with his friends at a table with my story practically dominating the issue. Everyone was impressed with the lengths I would go to and wanted to know more about my battle. And they wondered, what would it take for the school to give in and why I was facing those problems. You showed everybody- he said. - That was over six years ago, nobody knows who I am anymore. And then I said how can I make an impact and anybody care about people like me if I need to reintroduce the struggle and the discussion every five years, because everybody here moves away. You turn around and it's an entirely different city. He then said that I've made an impact on him and that what I showed him had mattered. I went on to tell him how much of an impact he made on me. Around the time we've met he lost his mother to cancer. He then faced a lot of personal problems that would break most of us. And for a while they were getting to him as well. But I've seen him- lifting himself up from underneath everything that life threw at him. Overcoming depression and putting his life back together to be stronger than he's ever been. To become the great person he is today. He was there on the sidelines of my life while I was watching his. And I told him that he's one of the most inspiring people I've ever met. Perhaps this is true about inspiration: maybe it's where you find it. Maybe we can all inspire each other. And I feel it's good to have someone who remembers who you used to be. Who can remind of you of your own journey, who can give you props when you don't give yourself enough credit. Who can remember, when you forget, because they were right with you- when it happened.

Thursday, November 14, 2013

Oh My Lord, I've written a book

As a child I used to go through novels very quickly. There was something about the experience that I can't describe. For me it wasn't simply about the stories, about the words that triggered my imagination. It was the smell, the quality of the paper, the size and the color of the print. Some of them were older than me, older than my parents and there was something exciting about holding a piece of work that generations have enjoyed before me. I was also fascinated by the whole process of putting a book together. Working with text and knowing when it's done. And the amount of talent and imagination that inspired people to say "I have a book in me", years, decades, centuries before everybody could easily print anything they wanted cheaply and in lot of cases didn't even need to print anymore. We communicate quicker, we write faster, who needs a book anymore? I will not write something as trivial as books were my only friends growing up, as I had plenty of both books and friends. Yet, I spent a lot of time in hospitals and rehabilitation centers as a child. Novels made the time pass faster, made it more exiting and less depressing, especially close to night time. At home I had a strict bedtime. You couldn't even have a discussion about it with my mother, which I guess may be a story for another time. The only time she would budge or negotiate with me was when I said "ten more pages". Yes, a printed book is a different animal to me than an e-book or a blog. And I may not have a million dollar contract with HarperCollins, but I was amazed when I first saw my words on papers. Not because what I write is in my mind that amazing, that's the point. It read like somebody else's words. What I submitted as a collection of random Blog postings felt like a story. It was coherent, it made sense. Somehow Andrew Sutton made it work with his editing and that first night I wouldn't put it down. It was on paper, it was on print, it had pictures and covers. Apparently I made it. But I was reading it as I had never seen it before. I met Andrew earlier in the day when I bumped into me at a restaurant and he gave me a sample copy. Apparently he already confused me with another person and wanted to give him the book instead. The next day he was introducing it at a small and intimate book presentation when he asked me to say a few words. At that time my wheelchair was falling apart, I was just off my antibiotics and half-sick in the cold city in Munich. As my dad was playing around with adjusting my sit that day it was tipping over and my knees felt higher than my head. And yet I felt like I was doing something right, like I was making it despite a less-than-ideal scenario and here I was, arriving at the scene with a book, my book, titled accordingly, "Never, never quit". I didn't get a dime for it and all proceeds will benefit Cerebral Palsy related causes in the UK, and still I'm incredibly proud for all the work we've collectively put into this project. So, if you are curious, pick up a copy.

Tuesday, November 12, 2013

Personal victory moment

Michael J Fox is back on TV this season and this time the character just like the actor- has Parkinson's disease. A lot of the show's intended humor comes from him coming to terms with disability and interacting with the outside world as the man he plays decides to return to his successful newscaster career and is not about to let his condition stop him. You may want to catch the NBC sitcom as soon as you can as the ratings so far don't warrant a second season. Before you say that it may be American audience not comfortable seeing art imitating life and someone with such visible disability, let me say that I've seen Fox, who was a comedic genius of the 80's and 90's in much funnier things than this. Either way- before the show premiered the network decided to promote it with a scene that has the family at the table having dinner together. Fox is reaching out slowly but surely to put food on everyone's plate. Focused, he gets on target.  "Can you not  have a personal victory right now?" his wife interrupts. "We're starving". It's intended as comedy of course and it shows Fox is comfortable making fun of himself. But it made me think of my own personal experiences. A lot of times when I was a child and even a teenager if we were in hurry my parents would just do things for me, "Because there wasn't a time for me to do it myself". Sometimes it involved finishing dressing me up or putting on my shoes, although I could always do it myself. Sitting me in the car by grabbing me from the car although I've done it myself a million times. Sometimes it was about getting me out of my bath or rinsing my hair. Because it was quicker and they did not have the patience. It's odd to think of independence as something you need to find time for, something that isn't practical, something that gets in the way. My mother has always thought of me doing things for myself as some kind of demonstration. Something I did to show everyone that I could. She didn't quite understand that I've done it, because that's what people do. Not to prove to anyone that I can, not to have a personal victory moment. I can either function in the society by myself and do all those things or I can't, and there are no short cuts. It was not being stubborn, but having people do things for me didn't  help me do the things I needed to do on my own. And in ways I felt violated. Not only because someone would literally walk in on me having a bath. But they would override my independence and often violate my personal space because at the time it wasn't convenient. Because you obviously are  allowed to flourish when everyone has time for it. And when that happens in un-does so many things I've done for myself with one move or a harsh remark. I had very few avenues to express myself, very few moments that were only mine. Not a lot of moments that you can keep private, because for a lot of things I had to rely on other people. The more you feel dependent the more independent I wanted to be. It wasn't a hobby or something I did for show. I wanted to live my life. And in life people dress themselves and feed themselves and go places. Do dishes, laundry and shop and clean. I wanted to be normal, but how in so many ways I felt abnormal. I didn't do it to be cute.

Sunday, November 10, 2013

Questions for Peto.

I seem to have dedicated a lot of time in the last few weeks to Conductive Education, the approach to Cerebral Palsy developed decades ago in Hungary by Andras Peto. And for a good reason- as a child I've spent a few years in then world famous Peto Institute, as an adult I became an associate director of a nonprofit running a similar (in concept although not in scale) facility in Gainesville. I was asked to speak about it  in Munich and lastly I credit my independence and functionality to those  years in Budapest. I was also brutally honest in concluding that as involved and as knowledgeable my parents were when it came to my rehabilitation, they knew very little about the ideology and the theory behind the method, because that was information that the Peto staff never volunteered. In one of the comments reflecting on my own intellectual quest to understand what Conductive Education is and what isn't, but primarily to deduce not only what but why I found a seemingly straightforward answer. That the point of it is- to do everything yourself. Some of us may be happy with that response. It may help us sleep at night, but that doesn't begin to cover the questions I have about what went on at the institute. At the congress in Munich I've seen a number of presentations, many of them about the life, the work, the methodology of the methods creator- what he allegedly said and believed about bringing up children with neuromuscular disorders. As I listen to what he had to say about how to approach a child, how a conductor should position herself in a group it became to clear to me that a man apparently came up with a set of principles- not only about   raising kids but what rehabilitation is, what it should look like and what can it accomplish. And it made me ask, since nothing in the Institute was incidental and served a purpose, why do I know so little about it? Here's a few questions off the top of my head:
1. Is there a purpose in having the rehabilitation future mimic tables and chairs when it came to shapes? We delt with "chairs" that had grab bars and "plinths" were just tables and beds you could hold on to while exercising?
2. Why did the plinths double as beds? Was it for efficiency of space or did Peto want his clients to have some deeper familiarity with the rehabilitation equipment?
3. Why were we dressed in those outfits? It may be so we all look the same, and that it was like a work uniform of sorts, but I remember a strong insistence that we would only wear shorts and never long pants.
4. The exercises were divided into sets throughout the day. Starting with plinths, moving to routines involving standing, then walking, then sitting in chairs- was there a reason for having a day planned like that?
5. Was the "overnight stay" part of Peto philosophy or was it simply an afterthought of parents not being able to pick the children up every day?
6. Why were the exercises always in groups?
7. Why were the groups coeducational even as we slept next to each other and had showers scheduled?
8. Who designed the exercise scripts and how and why are they evaluated and changed? The method isn't about perfecting any particular movement after all.
9. How are parents informed about what is likely to be accomplished with their kids?
10.  Peto's alleged principles and beliefs are still honored in the Conductor community. Are they in any way evaluated or confronted with modern science?
11. Why were we assisted from the front when walking and never   from the back?
12. Since the concept is "do it yourself"- why did the kids have bowls of water brought up to them when washing up and never assisted to walk to the washroom. Why even those who were trained to use the toilet were sat by a conductor, in the general room on a chamber pot, rather than assisted into the restroom.
13. The rooms served multiple purposes. We slept and did  morning exercises in one as the  plinths were lined up and put away. We had dinner and sapper and exercised more in another. It always involved the conductors lifting heavy tables and plinths in both every day. I never quite understood the reason behind the ballet with the furniture and going from one room to the next throughout the day.

Friday, November 8, 2013

Going home

Did I say how exhausted I was after my flight from Munich to Philadelphia? In the previous nine hours I could neither sleep or stay fully awake, dozing off between the movies on the plane. And then my back, my neck and other bother parts were either in pain or asleep when I couldn't. I wanted all of this to be over, to finally touch down in Gainesville, but I wasn't quite there yet. Welcome to customs. Before boarding a domestic flight you need to pick up all your checked luggage from one carousel, wait in long lines for what seems like forever and put it on another one. Couldn't they just have gone through my things in Munich since they pre-check my admissibility to America over there anyway? But I didn't even care if they did it anyway. Do with my bags what you will, but with me being  tired, irritated and sweaty, why does it call for me to be involved or do anything? Why can't the bags just check themselves for the next flight? Turns out they can. "He can run with the luggage for you"- said the man with disability services, pointing out a kid with a baggage cart. "But you'd have to tip him". Let me tell you, it was the best spent spare change ever and I was so happy that my mother decided to stick a few extra dollars in my manpurse at the last minute. I just went straight for immigration and then for my connecting flight. This was the first time I have used my green card to cross borders since I got it in 2010. In my mind I could see them telling me that there's something wrong it, that it was all a mistake. Or that they would focus on the now expired visa in my passport instead. I wasn't quite familiar with the drill. Do you show them at once or one after the other and what do you say? My headache was growing and with all the loading, unloading, waiting in lines I didn't even care about the luggage anymore, I was glad I didn't have to think about it anymore, I was done. When I got to the gate to fly to Charlotte where I would catch another connecting flight I went into the restroom and determined I have no strength to go back out. I was too sleepy, my head was killing me, I didn't care what happened next I had no energy. Luckily, modern medicine came to the rescue. I found some leftover APAP pills in my bag and it did the trick. My headache was gone after a few minutes and I could focus on getting something refreshing on the plane. When I got home I found that immigration has gone through my bags. I guess it's standard that they cut the locks, but at the time I didn't know it.  Either way I'm always randomly chosen to have my luggage gone through. Luckily I didn't have anything illegal, but I still worried that some items may be missing and I would have no way to know- the alcohol, the candy- but nothing was. Did I say how much I hate flying? How there doesn't seem to be a way to make a little less stressful, more pleasant experience? How it always turns into this exhausting, taxing production. I wish I could just take a pill and wake up delivered at my destination hotel every time I have to go somewhere

Tuesday, November 5, 2013

Independence and the looming sense of doom.

How did I become so independent? That's the question I've heard a number of times from people who came to congratulate me after my Munich speech at the Conductive Education World Congress. Someone said "my daughter just lets us do everything for her". A conductor commented "I'm the b... who tells the child and the parents that it should do more to itself". And the underlining theme in all the conversations I've had with both friends and strangers that day was "I don't know how to relate to or replicate your experience". I wish I could say that there was one thing I could pin point to and say this is it. This is the defining moment that made me want to be more independent. But I think it came with time. All I know is that suddenly I was the thirteen year old who has his friends over with his mommy sitting around in the apartment. Or having my dad fix me breakfast. It wasn't something you'd share with your friends. It wasn't "cool" having a parent breathing down your neck. When my mom went back to work when I was fourteen I felt like I had a new lease on life. Of course there were the little things I always enjoyed doing for myself. I must have been seven or eight when on the weekends I was away from the Peto Institute my dad would sit me down in the kitchen and have me butter my own toast or cut my own tomato. I'm still not very good at slicing things, but I like to fix something, by myself from time to time. I remember watching American movies with people in wheelchairs who were active and mobile, accomplished and doing things for themselves. I wanted to be like that, I wondered why can't I be? I guess my drive to independence may have come out of nowhere. There certainly wasn't any expectation in my family that one day I'll be making it by myself without anybody's assistance. But I felt crushed and suffocated by the vision of what I thought would be my future. Some version of my life that I would have to settle on. An imitation of life under somebody's care. I guess the fear of what it may be made me rebel against it. But it took tame. And let me say it again, we didn't even dare to dream I'd be as independent as I am today. But then, I line in a reality, in a country that allows me to. And if I don't believe that I can, that I should do it, why would I even try. Yes, I understand why for some people it's difficult to make that step and push for independence. Because what if you are not, try as you may, as physically able to make it? What do you have to fall back on? There would be nothing left to dream about as the illusive dream was just crushed by the harsh reality. What do you have to get back to? How do you get yourself back together. Studying abroad was something I dreamt about for years. But most times I didn't even dare to say it out loud. It's not that my parents are not supportive, they always have been. But the idea of me going somewhere by myself wasn't very realistic, even for me. Such eccentricities. The plan for me was to ideally find a job somewhere under my brother's wing. And then you learn to settle, because this is your life, this is your reality and it wasn't designed with people in wheelchairs in mind. I grew up with an odd looming sense of doom I saw my future as. How do you fight against it? What's the use in trying?  The fear of failure is something that stops many of us from finding out what we are actually capable of . And the drive, the desire to try has to come from within you. Guess what. The more you get a sense that you can function by and do things for yourself the more you want to do it. But it cannot be forced on somebody because you will grow to resent it. Nobody wants to have their life turned upside down, and I don't think it's a Conductor's place to comment on a parenting style or tell the family how they should live. Even it makes perfect sense and the comment comes in good faith they are always the outsider who upsets the dynamic by saying you're doing this wrong, now raise your child like this.I don't think anybody likes it when someone points out all the things in their opinion you do wrong I remember not liking when any of my therapists did that either. For people who spent 30 minutes a day with me at most, they sure had a lot of ideas as to what my mom should and should not be doing. And often the tips were sound. But the delivery, the know-it-all attitude felt offensive.

Sunday, November 3, 2013

Peto: revisited

It was the summer of 1989 or perhaps 1990 when my mother decided to spend a small fortune to investigate the new Cerebral Palsy approach that was making waves in America: The Doman principle. She spent six weeks in Philadelphia learning the basics and the science behind the new method. For days she would watch videos of people with parts their brains removed as a result of gun shuts and injuries. She collected comprehensive materials and books. The lectures were translated into multiple languages parents in audience would understand. The course as my mom recalls it was extremely well prepared. She was shown pictures, data and explanations and the organizers seemed to go to great lengths to have her understand what it does. Theories about how brain regenerates itself and how other parts of it assume functions of the cells that were damaged. She may have not have been an expert, but she was knowledgeable and she felt educated in the field. When it was done it made sense to her- the theory did stick, especially when it was illustrated with success stories that the Doman approach has helped. For a few weeks, their book "What to Do About Your Brain Injured Child" became our rehabilitation Bible if you will, but we soon found that the method is not really suitable for Polish conditions. All the crawling I had to do every day to go through all the childhood developmental stages if you will, required huge apartments and big spaces. The patterning- the passive exercise in which people are supposed to recreate swim like movements by grabbing onto and animating a limb required a team that we simply didn't have. I think my mom even considered hiring somebody to come by each day and help out, that's how much she was on board with this. I really don't care to discuss the Doman principle at great length. In the years that followed it was apparently subject to some controversy and there were people who say that the research was doctored, but whether it was or wasn't is really of no significance to the point I'm trying to make. The Doman did the one thing the Peto method never cared to. Convinced my mom. As soon as she felt she had the tools, the theory and the understanding, she was dedicated to it. It wasn't as simple as "do this exercise, do that movement"- she had a sense of understanding why we are doing every single thing that we do in the system. When she was told to use a plastic breathing mask with me, it was not simply because Glenn Doman, the method Guru thought it's a great idea. She was given an explanation and shown how the brain reacts to an environment with increased C02 levels. The Peto people were very secretive about the philosophy behind everything you saw at the Institute. All that parents could copy, was the visible, the external- the exercises, the tools- without an explanation. Give us your child for a period of time. We'll do something to it, you'll be lucky if we tell you what because we certainly will not tell you why. Is there any doubt why the Peto method has an image problem and Conductive Education is no longer attracting kids and parents like it did 20, 30 years ago? You could say of course that the difference in transparency are simply the result of the fact that the two approaches adopted two entirely different models. They "sell" if you will different things. Peto is a rehabilitation facility. It takes kids in and works with them, perhaps that's the reason why it feels it needs to keep how it works a secret. If you can easily replicate it, what do you need the Peto Institute for? The Doman Principle sold the method itself. It offered knowledge. Training- tools for parents to go and work with the kids at home themselves. You could say that's a marketing choice. But I will tell you that it's incredibly hard to have someone follow you if they don't know what their doing and don't understand why. Especially if you  want them to have faith and dedication to it. They will never be as driven and as motivated  if all you offer as an explanation is a story of some man, a man of science who worked with veterans in the 1940's. The key to Doman's popularity back then was what seemed like transparency and information. The "we're not telling you what to believe but take this data and use your best judgement" approach. My mom felt like she was given access to something. That somebody leveled with her as to what they can do and how. Something that I think none of the other methods that only expected us to do as they say we tried has ever attempted before.

Friday, November 1, 2013

Flying around.

At the Congress in Munich I met a young man with my disability. He has just published a book of poems he decided to call "Love on Wheels" that was presented next to my booklet. As faith would have it, we met again when we both boarded the same flight for Philadelphia. He had his friend or perhaps a family member with him and was in awe that I travel alone. Yet, at the same time he insisted to do most things by himself- when disability services personnel came to put him and then get him off the plane he firmly stated that he will transfer himself in and out and doesn't need help. And it reminded me that many years ago I used to be like that as well.  I have since decided that manifesting against the odds that I'm capable of doing everything by myself is simply not practical. I have just been on a plane for seven hours. My legs are numb and my tailbone is in pain. On a flight my options to find comfortable positions is limited. If I pull myself up into a wheelchair, yes I may have a temporary feeling of satisfaction that I did it by myself, but I also risk pulling my pants down, showing underwear or flesh, that my clothing will shift or turn or get caught or turn. It's simply not worth it. If they lift me and do a two person transfer it's faster, I struggle less and my pants stay on. At the same time he was comfortable having his companion and a flight attendant assist him in the lavatory. I simply can't use those facilities. I was on three flights on my way back to America, they were long and with significant waiting times between them, yet I didn't mind- I was able to comfortably locate a restroom and a diner at every stop. One thing I really wanted to comment on was the professionalism of people assisting individuals with disabilities, particularly in Philadelphia. God knows how many lifting, often heavy lifting I might add they do in the day. And then push passengers in wheelchairs from one side of the terminal to another. They must see their clients often in very compromising positions. Some of them may not be able to adjust their clothing by themselves properly, perhaps there are parts of body uncovered. After so many hours in the air some may have personal hygiene problems. Body odor. Yet all I've seen is the disability agents treating them with utmost respect,  perhaps in an effort to return some level of control over their own circumstance. I have never had anyone addressing me "Sir" in every sentence. And then they were considerate enough to ask me if I needed to use the restroom almost every time we passed one. In the meantime I've heard many reasons why I simply must return to Philadelphia some other time and explore. In a way I  depended on them to get me from one gate to the next and I simply would not have been able to do it myself, but they did not let me feel that. What I felt like was a valued customer, a professional adult who's being assisted with something trivial like picking out a jacket in a bigger size at a men's department store. Was my hair in a mess? Was my shoe undone? Did I stain my shirt with ketchup? They didn't seem to notice. I have to say, it's not like this at every airport. I've seen agents with attitudes, fighting with each other about who's turn it is to take a person across (and not because they both want to do it). I guess after you do the job for so long it gets harder to not see people in wheelchairs as burdens. They stop being humans, they turn into loading and unloading like a sack of potatoes. A statistic. A quota. Something you have to do instead of taking that cigarette break. It's nice when it's not like that. When you're surrounded by kindness, respect and consideration. And a twenty minute interaction with somebody actually makes your day although you're half asleep in your wheelchair and just trying to get home, bracing for yet another painful, uncomfortable flight.