I can only inspire myself

My parents started a small revolution back home when I was a child. They decided not to put me in a special  school,  an obvious place for disabled children in then communist Poland. They wanted to spare me the experience of an institution where kids with physical and mental conditions alike go together in an environment that felt more like a holding place than a place to study, where instead of being motivated, pupils are patted on the head. My parents wanted me to be the best that I could, to be as functional, the most normal- so, at the cost of straining their backs carrying me up the stairs for years and with a lot of informal agreements with teachers they put me in a regular school. Many of the other children with cerebral palsy in Warsaw soon followed our example. We were breaking ground, there was nobody we could really look up to. We had to rely on our own goals, dreams an ambitions as no people with cerebral palsy, with any physical disability really, were present in the public space anywhere to be seen.  All we saw was the most disability unfriendly reality- with stairs and steps and no lifts everywhere and we kept pushing. It would put my parents mind at ease had they known how I would turn out buck then. If they had a role model, anyone to talk to that done this before. But there wasn't anyone and raising a child with a disability has to be a lonely and scary experience. On  the other hand, I think it helped them push me further not knowing what to expect. When we started the Peto rehabilitation my dad was stricter than the conductors. In his mind I would be walking, no question. My parents always seemed to think that there's no limits to what Conductive Education can do for me, that I'm limitless. Maybe had they known what's reasonable to expect they would have given up along the way like many parents did.

I see a lot of Americans with disabilities, with Cerebral Palsy among others writing books, becoming motivational speakers or give interviews. Not that their stories aren't powerful, but I can't really wrap my mind around this concept of inspiration. There's nothing unusual about me. I think it's a basic human reaction to do the best you can in a less then perfect situation. I didn't choose my disability. But it's natural to fight, to push, to achieve things in spite of it.  I'm first and foremost an attorney. If people want to listen, I will talk, but I will never fully understand what they get from it. Because nobody inspired me. I draw my strength from my own dreams and ambition, from my parents and their work ethic, from my friends. I am my own biggest critic and I push myself hard.

That thing that lawyers do.

I like being a lawyer. Granted, I'm fairly new at this, but right now it feels like all the years of hard work, studying, focus, second guessing myself are paying off. I have a skill. A skill that other people value. A skill that wasn't given to me, that I had to fight to get. And who knew it would be a good fit? Every time I'm hired to do something, big or small, I feel alive, useful and needed. And being paid for something that I've done, that I've created, allows me to be independent and prove all those who said I couldn't do it wrong again. I wish I could say that when I do those things that lawyers do my disability doesn't matter entirely- it matters. Litigators are trained to look a certain way, to stand a certain way, to turn when needed for dramatic effect, to know where to place the podium depending if they direct or cross a witness. Presentation is key, we learn in trial practice. The goal, to establish a connection with the jury, to convince them, to appear confident. Being in a wheelchair gives you limited body language, there are no podiums of the right height  that I've seen and who knows what does the juror think or feel, how uncomfortable he may get if he sees the attorney rolling left and right. A lot depends on impression.

But when I draft it doesn't matter. When I draft, I play with words, I put them together for the best outcome. It's just my brain and the problem. Like a puzzle or a game. How you phrase things, how you arrange things, matters. You want to do a good job. You walk away and you come back only to change things or switch them up. A contract, a complaint, a statute -all are organic works of art. I was lucky enough to have an amazing drafting instructor in law school. She taught me when to use "will", "may", "must" and   not to use "shall" or passive voice in contracts. I don't always do things the way she wanted  us to and I'm sure she wouldn't approve of everything I write, especially given deadlines, but I have a better understanding and I agonize over every paragraph. Her class was like a boot camp of English grammar and a marathon of assignments and I'm thankful for that. It makes me want to rewrite every contract I write, but I have a skill,  a career. Hats off to you, Margaret Temple-Smith! 

North Florida School Days article about our Gainesville school

The Gainesville Conductive Education Academy (GCEA), a local school that incorporates specialized rehabilitation into its everyday schedule in an effort to make children with Cerebral Palsy and other neuromuscular disabilities functional and independent, begins another semester this August. The GCEA 's goal is to motivate the students to work harder and reach for the sky through daily exercise and learning routines. Regular classroom instruction is available at the K-12 levels, and is available at no cost to qualifying Florida residents. A new pre-K toddler class is being offered in the afternoons. Both parent and child work together to learn the principles of Conductive Education. The school is open year round with classes offered during the fall, spring, and summer.

The facility applies the Conductive Education method developed in Hungary in the 1940s by Andras Peto. Over the decades, Peto's Institute in Budapest has become a popular destination for Cerebral Palsy parents from all around the world, with many witnessing great progress in their children's walking, talking and other functionality skills. The “Conductive Education” approach has been adopted worldwide. You don't have to travel to Europe to find success stories, as the Gainesville Academy has had a fair share of its own. Katalin Szvoboda, the school's head teacher/therapist says she sees kids progressing every semester, including at the annual summer program that just concluded. One of her favorite stories is of Elijah, a boy with athetoid Cerebral Palsy. Elijah could not control his movements or stop when he was walking with a walker when he first arrived at the GCEA. After his first semester he was able to take 68 steps without a walker. Now he walks without a walker and returns every summer.

Szvoboda, who is known as the academy’s "Conductor," was born, raised and trained in Hungary, and has been involved with the GCEA since it first introduced Conductive Education to Gainesville in 2005. The school is operated by the Jordan Klausner Foundation.

R. Strzalkowski, who serves as the Foundation's Associate Director and is a Florida attorney, was born with quadriplegic Cerebral Palsy and moved to America seven years ago from Poland. As a child he received years of Conductive Education therapy at the Peto Institute in Budapest, and he is now highly functional and serves as a conduit to encourage the GCEA students. Strzalkowski reminds students, “The Peto method is hard work. Pushing yourself, being pushed by others. But you do improve. You work hard, you get better and you feel like you earned it, because those moments of exhaustion and triumph are so worth it when your parents see you walking down the hall.”

The key to success in Conductive Education is having the children follow the carefully designed scripts of exercises to make them to stand, move and walk with the use of specially designed furniture that serve as rehabilitation tools. The goal is to educate children to be as independent and as functional as they can be; as school’s motto states, “Helping Special Children Help Themselves.” The Jordan Klausner Foundation was founded in 1999 by University of Florida professor James Klausner in memory of his son who had cerebral palsy. The foundation is a 501(c)(3) nonprofit organization run primarily by volunteers to offer a range of services to the disabled community in North Central Florida, including educational opportunities for children, advocacy and legal services. It was founded by parents and relies on grants, donations and McKay scholarships for funding. The Gainesville Conductive Education Academy opened in 2006. It is located at 4315 N.W. 23rd Avenue on St Michaels Episcopal Church campus.

I'm in a wheelchair, I must be homeless

A number of times when I was on my home at night,  some drunk college kids attempted to give me money. It didn't matter how well dressed I was, how fashionable was the haircut I was sporting at the time. My friends laugh it up and say I should've just taken the cash people are throwing at me. But it became more and more annoying over time when it was obvious that no matter how I looked in people's minds I have to be in trouble or lost or homeless especially if you try to establish yourself as professional in the field of law. A profession that requires respect. If I can't get it from strangers that don't know the first thing about me, how will I get it from my peers in the courtroom if that is all they see, how will my clients trust me with their livelihoods? Once I even had money pushed at me in the middle of the dancefloor by middle-aged men that barely spoke English. "That's all I have" said one fratboy when attempting to give me five dollars. "You need it more than I do, get home safe" I replied. It's offensive and it's hurtful, it ruins my night. It makes me think of things I don't want to think about. What have I done to appear as a bum? I second guess myself. I've had a top of the line, airlight carbon fiber and titanium chair in a very modern reflective yellow color, but to those people all that matters just that I'm in a wheelchair. I can't blame those kids, obviously they mean well that's why they were concerned. But it hurts. Because as everybody else I'm driven, I want to be successful and achieve things, when in people's minds there's quick  a connection that they make. You're disabled, you're poor, you must be  unhappy and probably you have a disease or two. This is particularly disappointing because I live in Gainesville, a University city where people are believed to be smart, accepting and progressive. But then again, can you really blame them? What positive examples of well adjusted people with disabilities do you see in mass media? Most literature examples of a characters in wheelchairs I recall are extremely depressing. Is it surprising that this attitude carried over to television? Disability becomes a central plot element for them and their dream and story revolves around them wanting to get out of that wheelchair. For that reason even to me when I was a child a wheelchair felt like giving up, like despair, sadness and resignation.

We don't have celebrities in wheelchairs and that's where most of the problems today are stemming from I guess. We have characters in wheelchairs played by able-bodied actors that can get out of the chair if the role so requires. It's not that I believe that disabled characters should only be played by disabled actors and yes talent and fitness for the role matters, but it does give the role a little more authenticity when you can't just magically spring out of the chair when it's convenient. We're underestimating the power of the media and how it shapes our perception. The more the American public got to see people of different ethnicities dominating the screen, the more proud gay people showed up at red carpet events, the more normal it became. I do think it speaks volumes when it's not something you can just turn off after the work day's done. If it's something you lived. I'm still waiting for a tv character that just happens to be in a wheelchair, rather than having "a very special episode" built around them. Do they even have wheelchair ramps at red carpet events anyway? I want to see an actor trying to get up those stairs with E! cameras watching. Because to me, to many more the wheelchair is not a big thing. It's a part of life. A life that's busy, challenging, fulfilling and fun.

On Fox' dramedy Glee, there's a character in a wheelchair played by a physically abled actor. All he dreams about is getting to walk again complete with a "Safety Dance" fantasy dream sequence  routine. Many of the show's fans demand he conquers his paraplegia, because he "had a hard life" and the performer is actually an excellent dancer. I don't really believe that the role of entertainment is to send out public awareness messages, but I hope he never gets to walk again. Not only would that be a cop out, insulting to a lot of viewers with disabilities, but it would remove the purpose the character's existence on the show. The more people in wheelchairs you see, living "normally", being "normal",  the more normal it becomes. Perhaps one day I will not have a perfect stranger who doesn't even know my name think it's perfectly acceptable to come up and ask "What's wrong with you" or "What happened to you". Because to me a disability is something I live with, I don't consider it a personal flaw. It is however something that helped shape who I am, what my goals are and I how I go about it.

Step two: Getting the media to notice

The Jordan Klausner Foundation is truly a grass root effort. None of our officers are getting paid for what they do, we don't have an office space and we rely on volunteers for most of our operations. James Klausner tends to present it as an asset. I think it's just our reality. Are we missing out on a lot of opportunities to get funding, exposure, launch new projects and reach out to new kids? Obviously, but it's all we can afford. I'm not ashamed to say we are doing a darn good job with little resources we have. It's amazing that the foundation and the school it supports even came together. I say this to point out that the Klausner family did not do it for their own glory. At some point they saw educational problems of kids with Cerebral Palsy that were not getting addressed, that the some school boards created problems and that a lot of times no form of structured physical activity was offered, so they chose to act. James Klausner is juggling running the school, the foundation that sponsors it and his day job - a career in Academia not because he was looking for something to do on the side. There were virtually no alternatives in the area and there aren't as many in the State as you would think. Medical practitioners don't really trust us, physical therapists don't like us and we get no  media exposure. How can we survive? We are glad to get any kind of mention in the press because however inaccurate at least it may inform the parents that something useful for children with CP is going on in the area and that they should investigate. We send out press releases that get ignored, we've made phone calls that never get returned. I can get the news media to write about me. I was the spread of the Independent Florida Alligator, The Gainesville Sun covered my story twice and the INsite Magazine chose me as Gainesville's 18 most interesting people. But this never translated to publications about the organization and not because we haven't pushed. There is an article written by Harold Rocha for InSite about James Klausner but it never got published. The Gainesville Sun wrote something about the program when it first launched in 2006,2007 and The Alligator never did.
 Once in a while a journalism student has  a project or is trying to pitch a story, but nothing has gotten published at all.

That's why we were very excited when WUFT decided to do a 4 minute story about the school. It wasn't perfect but it was something and the Conductors who saw how it went down criticized the piece mercilessly and some even called for the closedown of the school. Some criticisms were valid. The girl doing the project was a student, she was there only for under two hours, she saw and filmed very little and made it seemed like moving your head and arms is the essence of Conductive Education is moving your arms  and head. But then you really can't explain CE in a dour minute clip. We have no control over how the soundbites and videoclips come together and what impression and understanding she leaves with. She chose not to interview me, or James only the people who were at the school. : a Conductor and a handful of volunteers she trained to help her. But at least she chose to show up. None of the other news outlets did. This is where the message gets lost in translation where I talk to people in Europe. Over there the Conductors get respect and the method is somewhat known and understood. In Florida at least I may just as well be talking about magical beeds  that help children with disabilities. Conductive Education takes long to explain, is not a miracle cure that you can make a short and sweet story about. The more time you devote to it the less newsworthy it becomes. Kids working hard to work around their disabilities every day sounds more like a form of training, a gym routine or a diet. It makes more sense but is less attractive to the viewer interested in short clips about the latest celebrity  caught without underpants. American media is not BBC.I once watched a lengthy segment of CNN Headline News that was about nothing but social gossip and celebrity trials. And to be honest, most things you can learn about CE is too much information for the casual viewer. James is very diligent when presenting the theoretical grounds for it. Last week when he was showing diagrams to the academic community at the University of Florida, I think most of the room tuned right after "Verbalization" and it made me question how did this description fit what I experienced in the Peto Institute in the 1980's. That's the thing- we don't know what terms to use to excite people enough to care. And I don't know how to reach  the tv and newspapers. When there is nothing but silence, a blackout of sorts if you will, resources, opportunities are wasted. We want to bring hope to parents, but we can't afford a widespread campaign. Perhaps our European friends can help us set up some informational resource for Americans but until then we have to rely on the media.

To those who say that inaccurate reports cause irreparable damage to the world of Conductive Education I say that my first concern is Gainesville. My biggest concern is that there are mothers living four, twenty, forty blocks from us not knowing that they don't have to settle for   a lifetime in the wheelchair for their kids. My biggest fear is that there will be children who will never be the best they could've been  because they never heard about us. And if not for this school there would've nothing else. We're doing as much as we can and it has to suffice... for now.

"My child is dumb, deaf and lame"

I'm not a big fan of political correctness. It seems that if we limit ourselves in expression any further soon enough we'll be unable to express ourselves at all. The title of this post comes from one of the e-mails I received from one of the Middle Eastern states and as soon as I read it my jaw dropped. I wasn't quite used to anyone talking about a disability in those terms. And it made me think about how our language evolves and is a product of culture. Obviously the father wasn't trying to offend or insult his son. He was concerned, he cared for him and he got on the Internet looking for help. This is why he e-mailed a Foundation in a foreign country to see if Conductive Education was the right fit for the Cerebral Palsy child. I get a lot of e-mails from all around the world : South America, Africa, Philippines, Middle East or even Europe where you'd think this method would be widely known and available and often those basic concepts, this one thought: "Can you help me" is put in pretty interesting terms. When I shared my observation with our boss over lunch one day and he commented how we should educate people as to the offensiveness of these terms. But how can they be offensive if they are acceptable within that particular culture?

In America they say "children with disabilities" rather than "disabled children" and James Klausner feels very strongly about it. The theory behind it is I guess to not let disability define a person, have them reduced to the condition they have. I often rolls my eyes when we discuss it. My life, my ambition, my goals have very little to do with the words you choose to  describe me. The English readings I find often talk about "disabled children", "community" and "population". And they seem perfectly acceptable.

Because words can no more disable me than enable me or affect me, and I think we spend too much time debating how we are expressing things rather than what it is that we're trying to express. Only in magic are words given the role to alter or create reality. If we know what we all mean, does it matter what words and terms we use? What is the meaning, what is the intention? I guess we just have to live with the notion that human language and perception are imperfect and do the best we can.

Have a life

My mom always said that having a job, doing something that keeps you passionate and getting up in the morning is a key to a better life and makes the days fly by faster. She enjoys bringing work home, solving problems and learning new things in her field every day. For me, life is about balance. I invest my all in what I do, my projects excite me and I love getting things accomplished. I share my mother's drive and motivation. But I also like having people around, being social, having hobbies - and just discovering who I am as a person. I'm able to do for myself more that I ever did in Poland and it gives me a great feeling. For me, life is not something I want to live through. I need to enjoy it.

I have to say I was pretty successful back home. I graduated from a prestigious university with honors, I was getting established as a chairman of a disability foundation I was running for a few years and I was pretty respected as a media writer for a popular industry website. Something was missing however and I wasn't happy. I didn't go out, I didn't meet people and having to move around town for whatever reason always felt like a big production. Imagine having to book a paratransit ride to go to a movie 1-2 weeks in advance. Imagine growing up not being sure if a theatre, a hotel or a museum is accessible enough for you  to join your class on a trip. As a child you learn to accept your limitations, as there are things you just can't do. When you're older it feels like your disability is taking control of your life and you're submitting to it. I didn't want to spend the rest of my life within four walls, in front of a computer. So I jumped at the opportunity to move to America for a year not really knowing what to expect. That was seven years ago. Was it exactly as I imagined? Probably not, I must've imagined myself returning home transformed like a character out of a Hollywood movie. But in many ways it's so much more than I have hoped for. My mom will never understand my excitement over the phone when I tell her I went grocery shopping by myself at Publix. Or than I can just board the bus whenever I feel like it and just go somewhere and be spontaneous.
 
I have Cerebral Palsy. Cerebral Palsy doesn't have me. I have my friends, my routines, my places. Little things give me joy, like my daily latte at Starbucks. There's so much more I can do for myself that I never knew and I accept the things that I can't. When I moved to America I vowed to be as open and understanding and as excited to meet and accept  people as I can. It was the most inspiring time and I grew more cynical when problems with immigration and the law school first hit. But one thing never changed. I feel loved, wanted, accepted and inspired. When I was changing apartments this week it was my friends that came over to help me move, or rather, "moved" me. And then painted the old place back to its original ugly dark white color. I think that's the way to win with your disability: have a fulfilling life. Be active, have friends who care about you as much as you care about them. Enjoy life. Keep busy. Yes, there are things I cannot do by myself, but would I really want to pack, unpack and paint by myself if I could anyway?