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.

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.

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?

"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?

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.

Money, money, money

I get strange reactions from people when I tell them of my involvement with the Jordan Klausner Foundation. Many see non profits as institutions that are after their wallets and then blow most of their funds on salaries, investments and office costs. The problem with that perception is that most of us actually volunteer our time and resources to do something good for the Gainesville community. Not having the money is the problem. If we had some to spend we could reach more children and parents with the message of hope that is Conductive Education. In fact, by not having a big budget we are hurting the cause. Think of the disability awareness we could raise, the children we could help, the programs we could launch. From that perspective, every day that passes is a day wasted. Because I want to help people. I just don't have the resources to. Everything costs money. Electricity- money, rent- money, our Conductors- money. And that money has to come from somewhere.

 Conductive Education is not free in America, we can't get it to be covered by insurance. We were able to form as an institution that accepts McKay scholarships [scholarships that the State of Florida grants to children with disabilities for education] but, because awareness of what CE is and what it does is very low, we simply don't have enough children. I wish we could go out there to reach more kids, but creating a social campaign of such magnitude requires, you guessed it money. I live in the country where explaining what Conductive Education feels a bit like talking about witchcraft. It's funny how it's considered a less established or known in America compared to other methods  although it has a track record of over 60 years. There are countless success stories, we have success stories in Gainesville! Children improve before our eyes. I envy non-profits that have big budgets and offices because to achieve anything you need people and resources and space. Grantwriters and educators and PR personnel. All those things are essential for coordinated action because with non-profits doing the best you can is simply not good enough in the land of wasted opportunity. I wish the media and politicians would rally behind us.

 "The Gainesville Sun" called our school "A miracle class" once. Well, we need help making those miracles happen. I wish that Mayor of Gainesville recognized that as one of only two centers in Florida able to offer CE at no cost our school is an asset to the city. I wish Gov Scott saw the social costs of having a disabled population. Our method is designed to help kids avoid disability programs, group care homes that he's been trying to limit spending for.  That's the way to do it- making people independent and functional. There's a lot to do and we need help. And I fear that between the lack of information and the lack of resources opportunities for children are wasted again. Between the American medical personnel's lack of enthusiasm and the competing methods we were never at war with. I do what I can, as I am a success story. But I fear that one day I too will give this up not because of my ambition butt because I pay rent too.