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.

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.

"Why do you do this?"

A friend asked me this question recently when I told him about my plans to start a disability rights  awareness workshop and my involvement with the program for children with cerebral palsy. He assured me that with my qualifications I could be a business lawyer or a skilled litigator and was puzzled that I don't want to have a career where my disability wouldn't matter. Well, I'm very much aware of my skills and education and all the other things I would be able to do. I don't do it because I have to. I do it because I want to and because it needs to be done. But I understand when he is coming from. When I was a child I saw a lot of people in wheelchairs getting involved in disability causes and careers and I thought they were limiting themselves. Truth be told many of them allowed the accessibility of buildings in Warsaw dictate their career choices. When I first applied to Warsaw University's faculty of law I was 19 and one of the first things I've heard was how awful was the experience going to be for a person in a wheelchair, from the Disability Affairs office of all places. Perhaps I should consider English or linguistics or whatever other major has better ramps.  Right there I vowed to be whatever attorney I choose to be. My disability won't determine this, I will not by limited by my physicality. And I think I kept my promise. This is what I choose. It's not all I'm qualified to do, but I have a lot of positive energy in me, I want to make an impact and I want to help people.

I'm not ashamed that I have a disability. I'm comfortable talking about it. Yes I know that's not all I am. And yes, I do believe that there is some deeper truth when you speak from experience. Litigation is often about standing the right way, walking up the right way, turning for effect, finding the right spot. I can be more effective doing this, because when I talk about this people usually listen. Nobody else is doing it in Florida and somebody has to. To me a great career is about the lives you touch and how you feel at the end of the day. I want to bring more awareness, because one day we all may wake up in a better environment all  together. Why should I run from something I accepted about myself years ago?

The Cerebral Palsy stigma

I never knew how stigmatizing Cerebral Palsy can be until I moved to America. Back home I had a disability. One that put me in a wheelchair, gave me poor control over my limbs and bad posture, but just some disability. Everybody has something, I've always felt and life goes on while we make the best of what we have. Imagine my surprise when I  discovered that over here "cerebral palsy" sounds like a negative, shameful term. The context that I see it popping in media all the time as well as popular culture is either as something to pity or to mean mental retardation just because it's a condition involving the brain. I guess I should just cry and cry and cry all day because my condition is so darn awful. And then everybody seems surprised to hear yet another success story of a CP person achieving great things. A lot of it comes in the form of comedy and I like to believe I have a great sense of humor, but many things that I see and hear make me roll my eyes.What is the point of singling out one condition?  'How long do they live?" "I don't know, but you never see one with gray hair" says a news reporter on a recent episode of "Family Guy" about a boy with Cerebral Palsy. On "Mind of Mancia" another person with this condition was brought out during the host discussion of things he finds "retarded". Even if it was meant to contrast and contradict it was still quite offensive.

I never minded having Cerebral Palsy. Would I prefer I didn't have it? Yes! Did I work hard to be as functional as I get through years and years of rehabilitation? Of  course I did.  Does it limit or prevent  me from doing certain things? Sure. But I'm happy. I view my wheelchair as something that enables me rather than holds me back because my independence and my functionality level allow me to use it fairly well. I can go places, achieve things, meet people because of what  a childhood of therapies made me. To me a wheelchair is a device, an accessory just like gloves and sunglasses.  My conductors, my parents pushed me hard to be the best I could be. When I think about it, it all comes together. Television of course pushes it to the extreme by mocking and poking fun but part of the reason why CE is so invisible in America at least in mind is this dominating approach to pat kids with Cerebral Palsy on the head, sit them in chairs and make comfortable rather than push and push and challenge, which is what Conductive Education requires. I'm R. Strzalkowski, I have Cerebral Palsy and I'm an attorney. I dare you to laugh and patronize me.

Manifesto: My dream for the Jordan Klausner Foundation

I've remained with The Jordan Klausner Foundation because I've always viewed it as a frame for the ultimate goal: doing good. It seems like it has the correct elements, a good concept and everyone's hearts are in good place. We are, it seems all on one page as to what we want to do and how we want to do it. Yes, the organization has been around for about twelve years and yes, it hasn't been very visible. As always, there are good reasons for it. The staff mostly volunteers their time and arguably, without being a lean professional machine chances are lost and opportunities are wasted. I also think that something happened between now and the time that the foundation was formed. The original volunteers, the parents that  had it started and their kids moved on. Also, years later, the initial enthusiasm of the Klausner family may have been cooled by the harsh reality: It is not that easy to help people, to reach out to those who we may benefit, but they don't know it yet, to find and inspire donors. Initial setup worked when it was about close friends and family coming together for a purpose but is limiting when we need to take the next step, open up and expand. Two concepts are key to what we do and that really speaks to me:"disability" and "community". We will always do things locally, support businesses, marketers and web designers that are from here.

  When I close my eyes I see the conductive education program growing. And I see it only as a beginning. I would like the Jordan Klausner Foundation to become a center, a hub if you will, for disability therapies and awareness. Horses and water worked wonders for me, I would like to see them as part of an inclusive, structured therapy program. As well as music and art therapy, paraffin wax heat treatment and herbal baths and massages to limit the spasticity, manual therapy and working with resistance. We need to find transportation for kids especially if they are not from here and in the future, think about accommodations for families.  I grew up with  cerebral palsy which left me with a lot of self confidence/self image  issues and phobias, so I see a strong need of having a psychologist on board. A legal assistance and civil rights program is a dream pet project of mine that I always hope to fund via a grant from the Florida Bar Foundation. I would like to work with marketers and PR experts to launch a bunch of public awareness campaigns. The problem is not only in how much or how little the disability community is aware of their rights, but how individuals with disability are perceived by the public and how visible they are. I also thought about scholarships for students in advanced degree programs to  help offset problems with standardized testing I have experienced myself. Lastly, I would like for us to be involved with socially relevant art and media projects of fresh up and coming creators.

  A lot of those things cannot be accomplished without money, because for most we can't rely on volunteers to provide them, at least in a structured, continuous manner. To do this, our Foundation needs to change. We may be small, but we have to be professional. That's why I'm seeking out help from grant writers and marketers, because I'm not qualified in those areas. Any non profit needs a continuous stream of funding to hire dedicated staff that will work just on this, all the time not just part time, to make all those things happen for us. What we need now is funding. Writing grant applications has little to do with inspiring stories and visions. It's focused, detailed, technical, repetitive. This is were my experience comes in: I'm not only an attorney, but I was a chairman of a foundation that I started for two years and being a media writer for six years exposed me to enough marketers and PR people to know what needs to happen although I can't do it myself.  We can carry James Klausner's dream further if we are open minded and adapt. But we gotta get started to get started.

Community and Music for Conductive Education

DeeZeePete will play at the June 24th fundraiser for our CE Academy and the foundation to support children with disabilities on their quest to be more functional. Please pass this along to any Gainesville bands interested in doing something for charity, spreading the word and reaching more kids. We are a small town charity and a small town program. We don't get the exposure or the big money national foundations have. But the Gators have always been very supportive and one thing I have to say for Gainesville is that the community has always been vibrant and we have considered ourselves part of it. The University-town nature of our city complicates things a little bit. There's a lot of young people want to get involved in meaningful causes. On the other hand, the Gator-crowd and the Gainesville locals seem to two be different worlds. It's not difficult to understand, Gainesville is a transient town. Students have their own goals, their own passions and they will not be here too long, why should they get too excited to help parents that are from here? I was recently asked to  help start a local cultural foundation for young musicans and I have no doubt UF students will stand behind it because they understand it more. Also, the nature of our cause doesn't help. Conductive Education isn't something that everybody understands  without a long explanation and the name is not very intuitive. It's a bridge difficult to cross, but when we do, magic happens. We have an energetic UF student group called "Gators for Conductive Education". Local musicians, once they understand how we help cerebral palsy children help us put on concerts, artists and designers support us with their craft. Just recently, UF alum and exibit artist David Tarafa designed a wonderful  poster to promote our Summer Camp. And we are very grateful. We are part of this community and whenever it hurts, we hurt. That's why we are so concerned for the future of this city. Many businesses have closed with rumours of many more following. We saw Ben and Jerrys, Hooters, Mellow Mushroom, American Apparel, Ti Amo closed down for good. Bars and pubs in this town are not only places where the Gators get intoxicated, but also cultural hubs where bands, comedians and painters have shows and practice their crafts. Common Grounds is closing in June after 8 years, Fyre/Shooting Star, Rum Runners/Fat Tuesday had closed down and Brophy's Irish Pub, 706 and Midnight are reportedly up for sale. The youth, the music, the art are the life of this town.  Gainesville gave the world such acts as Tom Petty and Sister Hazel, it's where Grooveshark is headquartered. We depend on local residents and businesses and can't help wondering how this crisis will affect us all. But for now, join us, help us, support us.