Friday, March 30, 2012

More, more more… The things I remember (2)

I read in the comments to my previous post that the routines and Conductors at the Peto Institute were "harsh". In a way I disagree- the exercises you got used to, the women pushed you forward and were expecting you to perform, but they were never mean. Unlike the nurses I knew from Poland they were warm. They were engaging and they showed a lot of personality.  I remember the kids from Israel nicknamed one of them "Crazy Marika". She wore big loopy earrings and laughed about everything. And the name caught on. On her last shift, she sat by our plinths at night to say her goodbyes and you can tell she was crying. One comment I agree with is that people had extremely high expectations and flocked to Budapest like it was the Holy Grail or the mythical Fountain of Youth although the Summer Camp I attended in Warsaw in I think '88 used the same furniture and routine. Yet, it felt less authentic. I remember that my parents adopted the way to assist me while walking a Conductor showed us. With my arms straight out and under their arms they would go backwards as I moved forward. When the women saw how I lean against any kind of back support while sitting in any chair they would have me only sit on things I couldn't rest on to keep a better posture.  There was a lot of singing with these exercises, I think it made me love musicals. But here's a funny thing: while there was a lot of attention to have us walk and sit properly, there was very little effort for us to actually be independent.

They would have us use a chamber pot when we were 9, 10, out in the public area although at home I have been using a toilet by myself for years. They always brought us bowls with water  and toothbrushes to have us wash up right there in the dining area, rather than have us actually go to the bathroom. We never buttered or put spread on the bread. They stood next to us and made our sandwiches for us. We were indoors all day. I remember two field trips, one to a planetarium and one to watch "Pinocchio" and one time we were out on a patio. I was fine with that because every day I was there,A lot is being said about "Conductive upbringing", but can you really have an upbringing of any kind without the parents involved? Mothers and fathers were not really welcome during exercises. They were never shown anything or told what to do. The only parents you'd see would be the fathers from Israel at dinner time, bringing kosher meals on plastic plates. International kids would be the only ones picked up every day. Many Hungarians were not even taken home on weekends. You couldn't not get a feeling that while foreigners did everything they could just to be there and had to pay with dollars even if they were sister-socialist states,  the locals used it as some form of daycare or boarding school....

Speaking of fun times, once they took us to the white floor where the oldest group had some artistic activities set up for us, I think it was Easter. My first kiss happened at the Institute, I believe I was 8... Once my parents left me for the weekend, because they couldn't fly over from Warsaw.. We didn't exercise, but did a lot of arts, crafts and games and the atmosphere was very laid back. But... I haven't finished talking about our daily schedule. After Lunch/ dinner we had one more session left, this one sitting in a chair and working with sticks. I remember how right before they always put the tables away by making them stand in row just like the plinths and then we waited for the floor to dry after they mopped it with a broom with a cloth wrapped around it. I remember how slippery the smooth floors were anyhow and how hard it was to walk with my sticks that had rubber tips at the end. And I remember seeing my mom when a Conductor would have us walk up to her as she was there to take me home.

Wednesday, March 28, 2012

More, More, More…The things I remember (1)

Andrew Sutton encouraged me to share more memories of my years in Budapest, this time focusing on time spent at the world famous Peto Insitute. It is difficult for me to separate it from other experiences of my childhood. The books I read, the people I met, the things I’ve seen on TV and movies, all I was looking forward to then back then seem to blend in and intertwine. You also need to remember I was very young when I went there.  But I shall try.

I remember kids were assigned to fixed groups. In a fashion similar to a class in an elementary school I saw the same faces throughout my time there. Rarely you’d see anybody added or taken away. A few children from Israel joined us for a couple months. I started on the red floor. Walls, frames, cabinets  of which each one of us had one  for our belongings, had one dominant color, different for every level. At some later point, when we aged I assume, they moved us up and everything was orange.  What I liked is that it looked nothing like a hospital. There was none of that cheesy, amateurish paint job on glass windows depicting scenes from fairy tales you see in children’s wards. We’ve had oversized  Donald Duck comic posters. There were no hospital beds, in fact there were no beds at all. We called the Conductors “aunts”, something that rehabilitation wards in Poland soon adopted. The Hungarian ones felt like “aunts”. The one back home were nurses like the rest of them no matter what they called themselves.  If you recall my experiences in hospitals you can understand why this new safe atmosphere was essential and therapeutic.

I remember that within the group the kids were subdivided. We all did our rehabilitation together, but were separated during school time after morning exercises. Non-Hungarians stayed in the chamber we slept in for more individual exercises with a Conductor, mostly walking around in braces. Younger Hungarian kids studied in the room we ate in, while older had a separate classroom.Accordion door closed at class time separated the sleeping and dining rooms. Although, correction: none of these rooms really served a single purpose. We slept on plinths, which is also where if I remember correctly we did our first exercises of the day. To the people who don’t know what a plinth looks like, it’s very much like a wooden table with enough space between planks for you to comfortably grab them. We would sit up and down, make some other repeated movements and slide up and down the plinth.  Mostly routines from the laying down, sitting up position and getting on and off it. Kata Szvoboda, the Gainesville Conductor explained that the dual functionality of the plinth was part of the design. To have us become more familiar with it.

We were all wearing shorts, so with our bare skin sliding against the wood you could imagine this got painful at times. The uniforms came from the Institute, they were all pretty generic socks, t-shirt and shorts with the  MSI logo stamped on them. They almost never gave us long pants.  The Conductors were strong fierce women. They were dropping the plinths and tables, moving them and stocking them away in the corner in the upright position, like they were blocks. After the plinth exercises we had a session when we did routines standing up, after they’ve put them away. We used the funky  looking chairs with grab bars to reach up, reach down, bend over. They were very light. Few kids fell down hitting their head, myself included because these things tipped over to the side easily.  Then we would separate for class time.

Tuesday, March 27, 2012

This Attorney is for hire

I don't usually post on Tuesday but I wanted to share this recent development with everyone who follows the things I write. While I agreed to help The Jordan Klausner Foundation prepare for the upcoming Summer Camp, I have decided to no longer be involved with it. I have nothing but gratitude for the family and they understand my reasons for stepping down. The organization had some good times and some bad times. Recently I have been involved with them mostly as a volunteer and my attempts to establish myself as a law practitioner  have suffered as a result. I would like nothing more than to be work with a non profit and help the disability community and I hope that's where my path will take me next. I don't have a job lined up, I don't have anybody snatching me for any kind of position, though I wish they have, but at this stage I can barely afford my own rent. I feel exhausted from trying to do too many things at once. I have not decided what my next steps will be and I am worried. The law market is competitive and I do have a disability that doesn't make me the most attractive hire, but I have hope. Perhaps one day I'll launch my dream free legal workshop for people with disabilities if I ever secure funding for it or start a nonprofit focused exclusively on  fundraising  disability causes. I wanted to thank the Klausner family for giving me an opportunity to do something meaningful, to be part of something wonderful that changed the way I view my own profession. But they don't really need my set of skills right now. I will soon migrate my blog to and I will remain on Twitter @LawyerOnWheels and Facebook: I'll remain in the Gainesville area and as always I'll get involved in as many disability causes as I can. Please say hello.

Sunday, March 25, 2012

Modern Parenthood and Disabilities

We live in crazy, busy times. We're always rushing and we want to do it all. A career and a family need to fit our schedules  and we are led to believe that nothing ever suffers as a result. I'm not criticizing anyone for wanting to have a comfortable lifestyle, hey, I like nice things too. But it's hard not to see that for my  generation of young parents the upbringing seems to happen somewhere beside and in between the daily things that distract us. The pressure is great and the drive is enormous and sometimes you can't even afford to do it any other way.  Kids are raised by video games and TV's. I've met children who played Warcraft before they could read. But they get by. Some parents can't really afford to adopt any different kind of lifestyle and work hard just to make ends meet.

My mom quit her job when I was born, but it was a different time. Things seemed to have been flowing a little slower back then. It was easier to make it, although my father did end up getting a second job. In communist Poland it was pretty common for the mother to become a stay at home parent with a disabled child. Mine decided it she needed to to make sure I'd get  all those hours of exercises in a day, extra care and attention and that my brother could also benefit from her presence. My parents gave up, changed their lives and goals for me. Altered where they wanted to be and what they wanted to accomplish. I sometimes wonder if that kind of approach would be possible today. Disability isn't something  that you can schedule. That you can pencil in between your tasks. I've met parents who give their kids maybe two, maybe three hours of physical or occupational therapy a week. And even that becomes a problem.  Getting there, driving, making it work.Now, I'm  not really a critic of these approaches, but as with everything you need to make it a continuous everyday commitment for it all to have any kind of benefit. Doing it twice a week, if that's all you do, probably it is not going to work. I see it with our Conductive Education program too.  For some parents, scheduling and transportation becomes a really big issue and they end up attending our Academy sporadically. They can't make it every day. And yes, the children suffer as a result. Perhaps something is better than nothing, because there is no other way, what can you do?  Disabilities seem incompatible with modern world.

On the other end our Summer Camp is always busy. Parents want to do something that will help their children, that will perhaps make up for an entire year of doing  very little. Because it's easier to commit to something short term. It's doable, workable to do it for six weeks out of a year.  Is it the same as doing it every day for the other ten months? Of course not.  That is the tragedy of our  times. Not to say that these people are bad parents. Some barely make it from day to day. Some are poor and uneducated, some struggle as single parents. As much as you want to help your child  you can only work within the means you have. America doesn't have a social and healthcare system developed in a similar fashion we so in Europe. And yes, it's often criticized, may be ineffective and will probably go bankrupt at some point. But right now it could really help those parents. Conductive Education, the method we use is not well recognized by the medical community, it's not covered by insurance and we don't offer transportation. Those parents are on their own.

One thing I will say for mine. We didn't have much, but they always found a way to make it work, be it extra jobs for my dad or some work in the West. I do think part of it was mentality. My rehabilitation was more an adopted lifestyle than just something we did for an X hour a week, which what it seems like today. In, out, you're done and on to the next thing. Somebody else does it for you. The sad thing is, disability needs that extra time, that extra care and some things you neglect you may never make up for.

Friday, March 23, 2012

March 25 is Cerebral Palsy Awareness Day

I was planning on writing another piece on my childhood years in Hungary, but I didn’t want to overlook the fact that Americans celebrate Cerebral Palsy awareness day this Sunday, part of an awareness month for the condition no less, which may be the only time in the entire year the media is likely to sit up and pay attention. So, what new approaches and therapies have we adopted lately? Is there anything   and groundbreaking to write home about? If you ask me, daily rehabilitation is still the way to go. The American medical community is still not very open to approaches like Conductive Education, but it’s unwise to assume it’s all about the money. I feel it’s understandable that there is distrust and doubt if we can’t produce convincing research to build our case on. Most of the centers I hear of are organized by communities, small groups of parents trying to help their kids. Creating that kind of setting on an ongoing basis is not only expensive (and not covered by insurance) but also requires commitment, certain infrastructure and often complicated logistics. Which, I think, is the reason why it’s easier to put together a summer camp. We talk about Cerebral Palsy awareness, yet still I hear it confused for a mental disability every now and then. You would think that in the West, in the country like America, that creates all those opportunities for people with all kinds of conditions, stories about Cerebral Palsy individuals are frequent. That you get to read about adults who, thanks to inclusive disability legislation were able to educate themselves and raise above it.  Nothing could be further for the truth. I see two types of stories. Adults, who were born with light  CP and were somewhat affected but have always walked, written as an example of triumph  and then tales of those who have to rely strongly on others worded in a way to bring out compassion. Last year the house of a man with Cerebral Palsy was robbed, that’s the only time I have heard he existed. A few months ago I read a story about a student assisting his extremely spastic friends in a range of activities from entertainment to eating.
I  never hear about independent Cerebral Palsy sufferers   accomplishing great things, having challenging careers. I never read about how they were able to improve their condition thanks to hard work and pushing their bodies. Where is everybody else? What are they doing? What are their problems? Have some of them beaten the condition and got out of the wheelchair? Shouldn’t we know these things to create awareness? We talk about babies. And we talk about children. But we never talk about adults. Have they all improved so much that their CP doesn’t matter or is there an actual problem with how we talk about these things. Where are the functional, independent people with Cerebral Palsy, who may be in wheelchairs but it doesn’t stop them?
I didn’t read about this in a newspaper, but I heard about at our monthly luncheon for local attorneys. A man with CP is about to receive an award for his pro bono work from the Florida Bar. Apparently, with tears in his eyes  he was thanking the Bar for being given the opportunity to help others. He’s not functional enough to write but he has gone through law school and has organized his practice directing other people to help him. Now, isn’t this pure inspiration?

Wednesday, March 21, 2012

The stress, the fear and my body

I've decided long ago to use this blog to help people understand what it's like dealing with my type of disability on daily basis. It might be embarrassing and it can get  private, but I feel the only way I can create some kind of awareness is by being able to talk about myself honestly. I have always feared large dogs. Loud, unexpected noises make me jump. I'm not sure if this is a Cerebral Palsy thing, but I have seen children with my condition freeze up in panic every time an animal came along, even at a distance, a siren went off, a balloon popped or a firework exploded. I've seen kids react like that even  to things we don't really consider threatening like horses and dachshunds. It's not simply that you're afraid of something and your heart is rushing. The feeling makes your entire body tense and stiff, that makes it more difficult to compose yourself. Often it feels like you're fighting your own physicality to make a movement. I don't really have that reaction to most animals anymore, especially at a safe distance. But I used to ride horses as a child, and one of the things you have to do to allow the therapeutic benefits of interacting with them is relax and trust them and letting your tensions go. I had a dog as a child and my parents decided I should have it exactly for that reason- to have my fear of dogs lessen. Now, that doesn't mean than that whenever a pony-sized puppy gets too close I feel comfortable. Dogs sense fear and discomfort and you never know how they will react when  they see a wheelchair if they have never seen one.

Just yesterday a girl let her dog run loose  outside my door and when she asked me if I wanted to pet it, I said: No, and I'd appreciate it if you kept it away from me.  But other things make me tense up even more. Whenever I need to focus on something that requires a great level of precision or care, like spooning instant coffee into a cup that I don't wan't to have all over my counter or holding a glass with boiling hot liquid or a plate on my legs hat may fall off or break. I remember giving a speech in Hungary 11 years ago at the Central European University and while my upper body seemed cool and collected, my legs were involuntarily moving up and down under the table. I was hit by a bus during my first semester in America while crossing the street. I wouldn't attempt it by myself for many months.

Even today there are times when this feeling comes  over me when I notice, "Oh, I'm in a crosswalk". And my right arm gets stiff and heavy, the feeling  of panic comes over me and I have to really press myself to work through it and move. This is what happens when I take a time-pressured exam. My limbs gets stiff, I get red spots all over my face and chest and I'm fighting my body to work with me. The more I do things, the more I'm accustomed to things, the less is at stake or the less personal it is the less it happens. John Quinn in his book "Someone like me" says every move of a CP person is planned. He was born with it, but always walked walked and was able to conceal it. I wouldn't  go that far, but I'm definitely more aware of when  I move and how I move and it requires more effort, especially if I need to transfer or balance my center  of gravity or switch positions.

Sunday, March 18, 2012

Making it: The leap of faith

4ssokI can't say enough. When I moved to America nearly eight years ago I wasn't sure if I could make it alone. I sure hoped so, but I've never done anything like this before. I was excited to try, but also scared. I threw myself in at the deep end. You never know how and if things will work out and sometimes hope is not enough. I never had to take buses everyday to get places, to figure out how to get from one point to another, to shop for myself, to maintain my apartment in livable conditions, to take care of my wheelchair, to have presentable clothing. My brother predicted I'd be back in three months. I never had to roll myself in a wheelchair around town as much as I did  during my first year in America and I built quite an upper body strength as I mostly have done it indoors before.  They say, you never know what your capable of until you try, but I feel I was lucky. Lucky that my level of functionality was enough for me to make it. That the reality created for me by the Americans with Disabilities act, the world of lift and ramps was what I needed to succeed. When I first arrived here with my parents who came along to help me set up, I was so determined to not have them help me or push my chair, I rolled myself everywhere, up every hill until my hands bled as if I needed to  prove something, to them but also to myself. My mom and dad intended to help to work a routine. To figure out how and which bus to board. But that never happened, because we were delayed by hurricanes, looking for apartments, furniture and essentials. They left and that Monday I had to get to school like I've been doing it for years. And that's all she wrote.

There are some valid criticisms of the ADA. It was crafted to address the needs of the veterans returning from war and was a result of the civil rights movement. It was not written with neuromuscular disabilities in mind. Restoring functionality of an injured soldier and creating the right kind of environment for children with Cerebral Palsy to learn and develop  are two different things. If you're missing a limb you need prosthetics and therapy. Maybe a wheelchair, but you're otherwise functional. That's why you  may need a special bathroom and maybe a ramp to get around. The initial approach was to reshape the surroundings. With disabilities at birth it's more complicated. You're not compensating for some disadvantage - you are shaping a human being. Yes, we  since had Individuals with Disabilities Education Act  (IDEA), and Section 504 of the Rehabilitation Act (504RA) but parents of CP children still face problems negotiating with schoolboards to create opportunities for them. Accessibility, accommodations, everything seems to be more complicated when you have to take into account more individual needs. And it's obviously about so much more than just taking a bus or getting into a building, but it feels like you need to exhibit some level of functionality and independence to use some of those things.  Cerebral Palsy is of of course an umbrella term. As different children are affected in different ways some are more while some are less functional. It’s not only walking and not walking. Some kids speak, some are non verbal. Some cannot control the spasticity of their limbs.  Tensions, contractures. Rehabilitation helps them in different ways and helps them gain new skills, but that doesn't mean they will benefit equally. It's impossible to predict the outcome. Growing up in my mind is not about the result, it's about the process.  You keep optimistic, you keep encouraging and  engaged and  you keep in mind even a minor skill that you pick up can incredibly increase the quality of life.  Work hard and try hard. Every new functionality means a different level of independence. If anything, I think what my parents gave me was to make me functional and not necessarily to have me run a marathon, although they always believed that nothing is impossible. They wanted me to walk.  And I’ve seen many kids walking as a result of years of Conductive Education. I wasn’t one of them, but I’m independent. I’m not disappointed.  That’s what my parents always wanted.I think they’d be happy how I turned out regardless

Friday, March 16, 2012

Postcards from Budapest

Not long ago Andrew Sutton has asked me to describe what spending a large chunk of my childhood in Hungary was to me. I guess it'd be easier to write about what it wasn't, because how can you quantify and dissect memories?  It's a very vivid, very pleasant part of my life. I was seven when I first went there, I was about ten when I left for good.  At the time it seemed like a different world. I arrived from then-communist Poland. Hungary was also part of that block, but their take on the system was entirely different. Back home store shelves were continuously empty. People waited for hours in lines to get anything from meat to candy. You needed stamps to get anything from food to gas. There was a regulatory monthly  allowance on a lot of things you can think of and often there was just not enough product to satisfy demand. Toilet paper was a sought after item. Sweets, if you could ever get your hands on them most of the time were not real chocolate. "Chocolate-like product in a substitute packaging" became a memorable thing of that era, and yet again, you were lucky to get your hands on it. Most everyday items were not available to everyday people. Stores around town would only be supplied on certain days with whatever they decided to bring. A word would spread that they "threw" something somewhere and people lined up whether you needed it or not. Some people would just grab whatever they could get, while others made a profession out of standing in line for other people. Everything was sad and grey but there was a certain rhythm to this lifestyle. Hungary was like a touch of the Western lifestyle. I remember going to the store with my parents, I remember the juices, the delicious peach nectar, the colorful packages, toys, chocolate, you name it. And the wonderful yoghurt like puddings!

Back home you would only get jeans and imported soft drinks in foreign-currency only stores. My Brother collected German beer cans and every package from the US or Germany caused great excitement. In Budapest I saw a Commodore computer in a display window once. A few times a month I got a comic book. That's how I first started learning Hungarian, I translated an entire issue of Tom es Jerry with my mom. Quickly, I was speaking the language well enough that I was translating our landlord's jokes I didn't understand, I remember her saying that the Soviets must've been shutting down our electricity when the lights flickered a bit. I remember Hungarians as very positive, giving people. Literally. My neighbor gave me a chocolate bar to get me to stop singing every morning as I was passing her window in my braces. One conductor gave me a hearth shaped diary, while another a comic book about the Smurfs. 

Poles have a very grim, sarcastic sense of humor. We tend to celebrate the anniversary of every  failed military attempt in history. Sad, reflective national celebrations.  We tend to be serious and very convinced of our unique role in our place in the world. I never really interacted with other kids' parents. I never met them. Virtually all left them for the night and most didn't take them home for  weekends.

I remember the swimming pool with the artificial wave on St Margaret's mountain. I remember my father's dream that one day I will walk up Gallert's mountain. Mostly to me Budapest was a place you can just live in.  Be normal and be happy. They had a metro we couldn't finish  for a hundred years. Yes, everything was wheelchair inaccessible just like in Poland and my mom would carry be and the stroller separately onto the bus (one time it even closed on her when she was getting it). But first and foremost I was stuck in between those two realities. None of my Polish friends got to travel, speak a language, see new places. They were going to school and I was away a lot. And then I brought gadgets as gifts. Like rollers that when you looked at  them at a certain angle gave an illusion of movement. I read a lot, and the novels  I'd devour often described adventures of people who chose a life of adventure or were banished and spent decades far from home. And sometimes I wondered if that is what my life would be like forever. I felt like a bit of a tramp, being here, being there. I guess the good thing about it was I didn't really contemplate how different my disability made me from my colleagues. I liked being able to experience things they weren't.  I had a passport at age of seven when most adults didn't have one, we had foreign currency when you needed special permits and we traveled when people couldn't move freely even within the Eastern bloc. All because of my disability.  Many  Polish families established a permanent or at least a semi-permanent home in Budapest. We didn’t. My parents didn’t speak the language, my dad had a job in Poland and my brother had a life. Every time we rented a different apartment. The nun’s, the sportsman’s. All up on the floor with plenty of stairs.  I remember the food. The spicy and the gooey soup like things with peas.

The little things I remember. The sheer joy of spending time with my parents in the really old apartment we rented from a nun on the weekends. The books I read. The retro style  piano. The feeling of going home on the evenings during the months that my parents decided to stay with me in Budapest. I don’t remember much, but I remember feeling safe. Nobody wanted to trick me, nobody was about to operate on me,  which is something I needed after all the surgeries.

Wednesday, March 14, 2012


Raf_s7973I really don't remember when we stopped my rehabilitation. It had to have happened over time. As I grew older we were doing less and less. I don't think it was a conscious decision. But, there's only 24 hours in the day, school became more and more demanding and having me do a lot of the exercises and additional activities through the day required a lot of preparation and effort. I remember using my leg braces and sticks well after my 16th birthday. But, as I got bigger and my knees became more spastic putting me in those things not only required a lot of strength from people locking the brace in the straight position, but the pain was indescribable . It began to look like one of the home labor scenes, with me screaming and a few people (because over time one person was just not enough) fighting my body to get my legs to be straight. But, my parents had me set up on a number of other daily physical activities outside of Peto like exercises. I would bike, outdoors or in place until I completed the arbitrarily set number of kilometers a day. I would ride horses once a week, go to the swimming pool two times a week, and then do whatever flavor of the month  therapy we were trying, like crawling around when my mom wanted to try the Doman approach.

But then, highschool had me in class from 8 to 3:30 doing a fairly advanced math and physics profiled program, I grew taller than my parents which made me more difficult to handle to begin with and the amount of work I've had was atrocious. When I was smaller it was easier for my mom to grab me, throw me on a mat to massage me, stretch me out or exercise me. When I grew taller and heavier and my spasticity  increased during puberty it became more difficult for her to practically having to fight my body and go against my contractures. For that same reason our Gainesville school doesn't accept children over certain age and weight, because although Conductive Education is about children doing things mostly by themselves following instruction, sometimes the Conductor needs to correct something or put the child in braces or even lift them. Some of those tasks do require strength. As skilled as she might be, she's a  frail lady, not a body builder and she is by herself.The key to Cerebral Palsy rehabilitation is starting as early as possible. Not only because you can accomplish more when a child is developing  and learning but also because younger kids are easier  to work with, physically. Plus they are out of the social context that can run a big interference, and don't have to focus on school. The younger kids are when they develop certain skills, the better. Parents often assume that their kids will indefinitely progress at a study rate, while in reality nothing is certain and you never know how and when things will change. Be ready to adapt. And of course most Conductors will tell you that while children can still benefit from CE at any age, the results may be not as impressive as if you start when they are very young.

Monday, March 12, 2012

Disabilities: Physical and intellectual.

Some 30 years ago one of the kids in my family really struggled with school work. No matter how he tried he just didn't seemed to get it. No amount of tutoring or the extra attention seemed to be making a difference. Back then we would say that learning just wasn't his thing. That he wasn't cut out for this, perhaps he was just slower. You know, some children are just better than others at certain things. Sometimes you are just not able enough. Perhaps today he would've been diagnosed with a learning disability.  And instead of writing him off like they would back in the day they would've gotten to the root of his problems and create the right set of conditions for him so he could study and maybe even excel. The more we understand different types of disabilities, the more " you're not good enough" is not good enough of an answer. Still, it's a relatively new concept. Nobody questions if physical disabilities are real- it's something you can witness and see how it affects a person. If it's a matter of the mind, you still see a lot of people questioning if they are real or is it just an excuse, an easy way out or a call for preferential treatment. "We didn't have all those 'learning disabilities' when I was young" I hear often. While this may be true, we also had a number of kids that were just not keeping up and we were just accepting it as a fact of life.  I have a friend whose learning disability makes it difficult for him to understand math. Now, I can't fully relate to him or understand what it must be like, but if he is diagnosed by doctors and his condition is studied, it's obvious to me that it's real. Yet, one of his professors when he heard of his struggles said "I don't believe you have a disability". Nobody would ever dare say that to me, because I use a wheelchair, my right hand is spastic, my body gets tense, you can see how it affects me and when you see, you understand.  You understand that in certain situations I need help, that I need accommodation just to have a fair shot.

The different treatment of things that are physical and of the brain  in nature  is of course nothing new. The traditional approach in American tort law had different standards for people with disabilities. Traditionally in negligence,you have a duty to act like a reasonable person under the circumstances would. Physical disability becomes a part of that standard you are compared against- if you broke your leg,your duty is that of a person with a broken leg. If you have a mental condition you still have to act like a reasonable person under the circumstances. Historically, the reasoning behind it was simple. If you use a wheelchair, if you're blind or you have a cane the public can see that and act accordingly. They know what to expect and what to do  just to keep themselves safe.

Of course, Florida Legislature also drew distinctions between accommodating the two types of disabilities. Please read this statutory langauge:
"§ 1007.265.  Persons with disabilities; graduation, study program admission, and upper-division entry; substitute requirements; rules and regulations 
(1) Any student with a disability, as defined in s. 1007.02(2), in a public postsecondary educational institution, except those students who have been documented as having intellectual disabilities, shall be eligible for reasonable substitution for any requirement for graduation, for admission into a program of study, or for entry into the upper division where documentation can be provided that the person's failure to meet the requirement is related to the disability and where failure to meet the graduation requirement or program admission requirement does not constitute a fundamental alteration in the nature of the program."

From what I understand the "intellectual disability" language has only recently been removed from the section, finally treating all disabilities equally, but for the longest time they have been treated as two different animals  and limiting students' options to get a proper education. Because awareness and change of attitudes always takes time. And in time comes understanding and acceptance. This may not seem related but a person with a mental condition once told my mother that they envied me because people "see what I have" and are able to "pity" me. While pity is not the emotion I'm going for, empathy is not a bad thing. It must be so much harder to get your voice heard if people don't even notice your struggle and never stop to think what it must be like. It has to be difficult to stand up for yourself if there's nothing that appears to be visually "wrong" with you. And the temptation to do nothing, to not have to deal with being singled out because of some condition you have even at the price of not performing as well as you could, I imagine, is great. I've heard of people who would not even get diagnosed, who think they should just "suck it up", because of fear, because of the  shame they expect and the lack of understanding. Another friend who was diagnosed with a learning disability asked me once if I thought that learning disabilities will ever get the same level of care and awareness and protection in places like the work environment. And to this I say, the more we see, the more we understand these things as real, the less there is a tendency to brand them as  easy rides. And of course the more research that goes into the causes of some of those conditions (like the links between ADHD and food additives and colorants for example) the harder it is to dismiss them as character flaws. 

Friday, March 9, 2012


My Cerebral Palsy never seemed to matter to my class mates. My elementary school friends were around me since the first grade. I think at first they were too young to care or question and later it just became the normal state of things for them. They have seen me crawl, lean against furniture, exercise, walk in leg braces with sticks, bike, transfer from chair to the floor and swim. In Polish school system at every level you attended every class with the same group of people until graduation. The upside was that kids would bond, get to know you and used to you better. The downside- when problems started, you'd still be stuck with the same people. When I was younger my parents made sure I made friends and have some kids over. My mom knew how to intervene and break the ice and then to steer our interactions so we'd play along nicely. But I had a vivid imagination  was fun to be around and I could turn anything into a toy or a game, be it a  tape recorder, when we would act out our own shows, my aunt's typewriter or my dad's tool case. Later on we had a computer, my father went to America to visit our family and sent packages and we bought a VCR- all those things made me and my brother even more popular around the block.

But then, when I was 12 a new kid transferred to our class. He was sarcastic and funny if not on the mean side and he soon join the little group that hung out at my house after school. Soon he showed his true colors, at first making fun of other weaker kids. Then, maybe a year later, he'd move on to me. The jokes became meaner and meaner and soon my other friends would join in making fun of me. They mocked my spastic right hand between classes, my posture gang up on me just to get me upset. It progressed to a point that the'd be throwing chalk or a sponge at me or try to put them under my sweatshirt. They would harass others as well, but I was weaker. I couldn't run away or change sits as at that point I was using a regular chair in class. The boy was perceived as very cool, that's how he found followers and it escalated from there. It really doesn't take much for things to fall out of balance and for children to be mean. As kids grow older, it's more difficult for parents to go in and fix things. To iron them out and make sure everyone is included. I guess everybody wants to be "in", so when the group decided to turn on me so did the kids in it. That was I think the first time I felt different. Different and humiliated. Not only did my Cerebral Palsy become a big deal, I couldn't defend myself. I was an easy prey in a group.  Kids can be mean if they single you out.Still, the boy would come to hang at my place every day after school. I was too cool to tell my parents then, but when I confronted him at home he made it clear he had no regrets and he'd do it again the next day although to my mom we were good friends. You don't tell on others and you want to be cool and accepted.  I guess I didn't realize how quickly things spun out of control and I thought I can deal with itBecause you're always taught to handle your problems. .  But it's tricky. Kids tend to turn on each other and it happens, but then it gets meaner and meaner, it zones in on the weakest target, it's no longer a "guy thing". Kids tend to turn on each other and it happens, but then it gets meaner and meaner, it zones in on the weakest target, it's no longer a "guy thing". Ultimately, I did tell. I told my parents and our teachers. But the one person who really had my back was my brother. My seven years older, martial arts training brother. He came to my school during recess and managed to humiliate the boy in front of our entire class. He didn't have to touch him. As he was walking towards him the kid was backing away with his head down with his face read. And all my brother had to do was to say "Why don't you throw a sponge at me" "Why don't you throw chalk at me". And there was no response. Only shame. My mom spoke out of course and my teachers gave the kids hell. Because it wasn't just one person. It was many against one. And then all of those who saw things and did nothing.

Things were never the same and although we lived in the same neighborhood I hardly if it at all spoke to any of them after graduation. I went to highschool and then the University and the only time I've heard about any of my former classmates is when my mother run into any of the other parents. What I can I say. Things happen and people grow apart. 

Tuesday, March 6, 2012

The hospital trauma

I ended up going under the knife a few times when I was little. My muscles and tendons were becoming stiff and needed to be loosened so I could properly move, but still you couldn't not get an impression that some surgeons believed that you can "cure" Cerebral Palsy with a scalpel. It was a trend to operate on spastic children as early as possible. The hips, then under the knee and the Achilles tendon above the foot. Every time you would experience the ordeal of being in a hospital by yourself for many weeks over again. Sotirow was the name of the surgeon that every parent wanted to get. He was some kind of Eastern European medical celebrity, a doctor visiting from one of the other communist states, can't remember which one. He believed that they needed to operate on my legs as soon as possible to prevent me dislocating my hips. I wasn't walking so I doubt that was ever a possibility and I think he actually convinced my parents that after they correct those "defects" I would walk.Fixing me through orthopedics.  I was six when they opened me up for the first time and I can't describe the loneliness and the physical pain that haunt me in my dreams till this very day. I didn't know what was happening, my parents were not allowed to see me but on the weekends and I was very afraid. When the lights go out and you hear nothing but silence coming from the hall in a bed that is not your own and you try to look out through the Snow White painted mosaic window, you feel helpless and abandoned weeping at night. I woke up in a cast waist down, with my legs spread, separated by something that looked like a wooden stick. They've put some corrective metal plates or braces in my legs and weeks later they've sent me home. Then they had to do it over to remove it. A hospital is not something you go through and forget. Some of it stuck with me till this very day. My parents were not allowed in because the doctors had a policy against it.  Why, I don't know but I experienced no warmth and no comfort there. I suspect they wanted a highly disciplined ward.  When my mom asked the nurses to watch my spastic right hand they bandaged it to the bedside rails. When another didn't want to be bothered with my requests for a bedpan she told me to pee on my myself. I was only six, things like that stick with you. I remember waking up, feeling thirsty, not being able to move. My legs were in pain, it was itchy under the cast and the stitched area wasn't healing up very well. As I grew the marks became longer and bigger and uglier and still are very visible today. I also brought chickenpox from the hospital. Can you imagine, being at home, not being able to move or scratch yourself, sleeping in a fixed position waiting for my mom to do every single thing? I recall my dad was abroad.

Years later, the attitudes changed. When I was twelve and participating in one of the rehabilitation summer camps I was told that cutting in all three places changes your centre of gravity and should not be done. We never did the knees or the Achilles. My mom felt she couldn't have me go through it again. During what seemed like forever in the cast I gained weight and one of my legs became longer than the other. It was more difficult to exercise as a result. It feels to me like I was a subject of some experiment on corrective surgery that damaged my psyche for life. How can you fix something in my brain with leg surgery?  Isn't that just a silly idea?  Not to mention that they missed a few of the stitches and I had to go back to have them out. I noticed them before my parents did because the area was quite sensitive, I just didn't tell them. I was that afraid  of the pain, of the place. When I was visiting the facility just 5 years ago looking for options to limit the contractures in my legs all those memories came back. When I was laying on that X-Ray table, where they took me over and over years before I was that kid again. I felt like then when I was naked and ashamed and a person was telling me to relax from the other room. And all my fears came back. I think my childhood was more scary, more painful than it ever needed to be. And some of it will be with me forever. A child's mind is delicate and surgery is always invasive. At  least now they're not as eager to cut. And it wasn't just a Polish thing. I've seen many kids with visible surgery marks when I was in Budapest. But, times change.  From what I understand, they use toxins now to paralyze specific muscles and avoid surgeries until it is really necessary. But they do one one more- to stabilize the feet to prevent them from turning inwards as you take a step.  

Monday, March 5, 2012

"Let's amputate your legs"

This may sound like a made up story, but it really happened. A couple of years ago I was visiting Poland in hopes of scheduling a surgery on my legs. Over the years my muscles and tendons became stiff and all the contracture  pulled my kneecaps up and I was looking to have it corrected the next Summer I went back. This ended up not happening because of all the Green Card issues that exploded later that year, but the story is interesting to tell, because it showed some really arrogant attitudes from the members of the medical profession all too familiar from the communist era. We ended up seeing one of the most highly regarded names in Polish orthopedics, a  professor ordinarius, privately of course on a paid for consultation basis. We really didn't know who to see at that point, because we really had no connections in the Cerebral Palsy circles anymore. And he seemed like a knowledgeable man to ask, because of his age and decades of experience. A gray haired, respected practitioner  and researcher. We were glad to have him see us and he was happy to take our money. From the first minutes it was becoming obvious that his experience with spastic limbs was limited at best and he didn't really know what to do with me. He wanted to say something just so it wouldn't seem like he was wasting our time and his, which he was.  As we were talking, he said,you're so highly functional and your upper body is strong, your legs seem to be holding you back. It is just an idea, but perhaps you could walk with prosthetic legs. He delivered it in a very nonchalant   fashion as if not realizing he just told my mother he wants to cut off healthy body parts for no apparent reason. She obviously got very upset and tried to argue with him as if he was planning to cut them off right there. The conversation got too silly for me so I just rolled my eyes and waited for it to be over. It was obvious  he wasn't the right man to help us. And it reminded me how when I was six and had surgeries on my legs that put me in a cast waist down for... weeks?, months? I don't even know and the doctors wouldn't let my parents see me because they knew better.And I think it's a broader problem. It seems to me that some medical practitioners are hostages to their limited perspective and they are not open enough to try other ideas. The "I know better" (even if I don't know anything about it) attitude is not only a product of a particular time or location. I also think that resistance to the Peto method is rooted in the same type of sentiment that prevents some to even entertain it as a possible approach. And just by watching my mother interact with the man I realized another deeply rooted thing. Utmost respect for the profession, no matter what. Even if you're dealing with an closed minded  person. We are ready to dismiss things, even if we don't know.  Some people will just say silly things. I almost had my legs amputated!  On the other end you have parents, who would try anything if it can possibly help.  But they don't often have the full information. To my doctor his suggestion  made more sense than alternatives that he didn't consider and didn't  know existed. Obviously we didn't go through it, but it opened a Pandora's box of questions I'm too afraid to ask.

Friday, March 2, 2012

Brothers and sisters

Having a child with disability affects everybody in the family. How could it not? It requires all that extra care and attention at least initially. Today I wanted to focus on the ones we rarely think of in this equation- siblings. It's not simply the fact that the parents dedicate more attention to one child, which try as you may, will come in some ways at the expense of the other. It's that when a "special needs" baby arrives the whole family life reorientates. The daily exercise schedule, any other therapies, preschool or school, the pick ups, the drop offs call for a lot of sacrifices from everybody involved. My parents decided to transform our entire apartment to fit that lifestyle. Having a stylish pad was not functional. We had grab bars and wall bars and exercise mats. And every inch of the apartment served as space for me to walk around in braces or crawl (when we briefly decided to try the Doman method) and that also included my brother's room. My parents have decided to include my brother as little as they could in my routines. Seven years older he deserved a normal childhood. But he had to grow up and mature quickly anyway. When one of my parents was in Budapest and the other was working he was pretty much left to himself. My mom stayed at home but when I wasn't in Hungary she put in hours and hours of rehabilitation a day. My dad worked a four day shift cycle when he was home, or he would make money abroad. And I would go with one of them to Budapest, for multiple months at a time (although during my one six month stay the would just fly in on the weekends). He was older and in communist Poland it wasn't uncommon for school age kids to wander by themselves after class with the house key hanging from their necks. Overall we benefited from having a stay at home mom. Still, I was unknowingly pulling the attention from him. Still, he was doing fine. He was smart and responsible and excelled at school. Only sporadically would he pick me up from school, we would argue and fight constantly with my mother often comparing us to the brothers from "The Wonder Years" TV show.

 I think the way how he didn't treat me any different because of my disability gave me a normal childhood. And I've seen families that worked differently. I've met brothers with age gaps as big as ours that seemed to be joined at the hip. Very affectionate, very caring, always interacting. Sometimes, the fully abled child would be slightly older. Helping the brother, assisting the parents, being involved in the daily routines becomes a task for everybody in the household. They become another set of hands and eyes. Back then my mom was really impressed with families like that, she would comment how we never played as nice. And I guess families as whole bond over being invested in helping the child become more functional together. Parenting is a difficult task and decisions in upbringing have implications either way. But I know we made the right choice. Not to say that my brother never helped me when I needed him, because there were times that he stood up for me to my school bullies or explained a physics problem, but the concept was that I wouldn't need him as much. We had our separate lives, we had our separate friends. I don't think it wouldn't be fair any other way. Why should his dreams and goals submit to mine?

Thursday, March 1, 2012

It's about the people

My biggest regret, something that I and many of my friends who supported me have to live with is not going after the administration of the LSAT test to change their procedures. They didn't want to accommodate me in ways every other exam did, they suggested a mental evaluation, like they previously did with Cerebral Palsy applicants, they wanted to flag my scores. Claudia Adrien, a freelance journalist from the Gainesville area gave me an opening. She resourched many other instances, many other lawsuits, a class action with another possibly coming together, investigation and a probation, but I did nothing about it. I got in and I threw the towel. I've had undergrads protesting in my support in the Dean's lobby, I've had my best friend put together a rally that ended up in the papers, but I did nothing. But something good did come from that story. My  friend decided to choose to go to law school. There were so many new forms of injustice he didn't even realize existed, so many problems he didn't know, so many people without a voice. Seeing some of the things I've gone through motivated him to dedicate himself to help other. It is not to say that I'm so amazing that I changed his life. But knowing me and talking to me opened his eyes to some of the things you don't normally stop to think about. He wanted to be a rabbi, but hopefully with  a law degree he can affect so much more people. Years later, one of the kids squatting in front of the Dean's office with a sign that read "A person is not a number" bumped into me as a first year law student. I've had a few people approach me at the school when I was still a student saying how reading about me made them choose this particular profession. One appeared shy and starstruck and even said that he chose that particular school in hopes to meet me. As flattering as this may be, I think it's really not about me. It's about the story. It's about fairness and doing the right thing. Because people are essentially good. And they want to do good. And they get outraged when they hear of injustice they never knew existed, they want to join in, be inspired and have a positive impact. Many of my friends didn't know the first thing about Cerebral Palsy, Conductive education and different forms of rehabilitation. It wasn't something that would pop up in their world. Some became interested, reading up more about it, quite a few ended up volunteering. Another friend decided to launch yardsales for our cause, a cause she really has no personal, emotional connection to. Because in their busy life people don't stop to think how do individuals with disabilities function? How do they educate themselves, how do they improve? What needs to be done? We all need to broaden our horizons sometime. For my friends it started with my story. A story like many others, perhaps more colorful because of the fact that I moved here from Poland. And out of a very dark period of confusion and doubt in my life something positive was born as people felt motivated and inspired.