Culture and fear of disabilities

Paralympics in London go on mostly ignored by the American media and once again it had me wondering why. It's not that the sport element is not breathtaking. Wheelchair basketball for example is spectacular. It's not that the people in it are not true Olympians. Why wouldn't something that is perhaps a little different but still amazing to watch find an audience? It's the fear of disabilities that makes it not your family friendly type of entertainment. It's simple.  Nobody focuses on the hard will, the determination, the hard work that gets these athletes to achieve what they do every day. A disability is a buzz kill. It makes people uncomfortable. They may think a missing limb is not attractive to watch. But most of all, they're afraid. They fear that this may happen to them. And it's not something you want to think about while you're unwinding in front of TV or having drinks at the bar. It's something that I recognize in the looks of people whenever I'm out with friends and I'm having a night out on the town. I've written about it before. It doesn't matter that I was born with my disability. It's all I know and I'm as fine with it as can be. People see me at a bar and they get uncomfortable. The see me and my wheelchair and think: car accident. Or injury resulting from diving. This may happen to them. It could happen to them that night. It's not something you want to think about while you're having drinks. Not in a culture, not in a town that promotes the care-free lifestyle of fun, drinking, dancing and sex. You don't want to think about the darker, somber part of life. And yes, you don't want to think about consequences. This again has nothing to do with me, and everything with the mental process of the other people. Think about it. NBCUniversal/ Comcast broadcasts a number of channels that show every variety of reality programming from how to renovate a house on TV to desperate single women in their 30's. I'm not sure what it says about our society, but they are pretty. I have yet to see a show that focuses on the intellect. That showcases people that are well read, travelled and soft spoken. Recently I caught a glimpse of a new show called "Gallery Girls". Other than it features a bunch of self-involved, catty women I have to say it's not about anything at all. I used to think that the point of these shows was to make fun of them as they appeal to our lowest instincts when feel better while others come apart and humiliate themselves on national TV. But people do idolize them. They become bona fide celebrities. Who cares what they offer? They are pretty. It seems like in our culture that's all we think about. I have no idea why I've heard of Kim Kardashian. I have trouble identifying what she is famous for. I do know what she looks like, I know she makes headlines on HLN and I don't know why. It seems to me, that we are fixated on appearance. On the external. What does it say about our society? Do we all buy into this vision of glamor? Is this what we should aspire to now?  I don't want to preach about the effects of the low end programming on the younger generation because I have no idea and it's not really the point . I also enjoy occasional bubble gum television especially after a stressful week. But I can't believe that families and heads of scheduling alike can't recognize how much you can learn about human spirit if we just focus on something else than hair, make up, fake breasts and six-packs long enough to notice these amazing people who challenge not only others but mostly themselves.

Conductively marching on

Those who know me remember that I’m a big supporter of Conductive Education- an approach to Cerebral Palsy devised in Hungary decades ago that took the world by storm in the 1980’s. For the last few years I’ve been involved with The Jordan Klausner Foundation, a small and local nonprofit started by a university professor in memory of his son that adopted this method for the school it was running in Gainesville. I’ve been passionate and vocal about making facilities like that one available in America and reaching more children in need. I was lucky enough to have benefited from the source if you will- I spent a few years in the world famous Peto Institute and that time was well invested as it made me more functional and independent, giving me a better balance and control over my body. The method is however not widely recognized and accepted in the United States. More often than not it’s the initiative of parents in small communities that put these programs together. And they deal with limited resources, lack of visibility and run on low funds when the economic crisis hurt or limited some of the public funds to depend on. Some of the big centers are in turn either too expensive for some parents or not conveniently located close to where they live.

The Klausner family put a lot of free time and effort into making their Academy a reality. James Klausner already had a job, one that was exhausting enough and paid his bills, when he did what must’ve felt like taking on a second one. He worked tirelessly to keep the Academy afloat for many years. He did to help all the kids and parents in the community that were not properly looked after. This year the Foundation decided to suspend the school activities. To have it run again, it would have to go back to the starting point. Find a new Conductor, a new group of students, figuring out a new financing model in the face of declining scholarship and a new location. I wasn’t there when this decision was made but I understand it.  Many of us have moved on, some out of State and the Conductor moved to London. Foundation will go on in some other form, honoring Jordan’s memory in Florida and his battle with Cerebral Palsy.

But, where’s passion, there’s hope. There’s quite a few Conductive Education programs in Florida, so I figured it must be true everywhere you go. I thought the biggest obstacle parents face is finding a way to pay for it and figuring out how to get there. Recently I got a call from a mother in a neighboring State of Georgia. She told me she would be perfectly willing to pay for a CE center if she could find one. Apparently there were none, free or fully paid for at least in her part of the State. She will come together with parents of other disabled children and form some kind of structure. They are looking into hiring a Hungarian Conductor and starting the H1B visa process. And it gives me hope. It reminds of the drive everyone at the Klausner Foundation had.  For as long as there are kids with disabilities, there will be parents trying to make it better. One school will close and the other will open. Nature abhors a vacuum. For as long as there is passion and dedication these kids will be fine. Putting a center together will not be easy of course, but I know first hand that parents will go through a lot just to help a child. And I will be admiring their accomplishments from a far.

Extreme weather

The hurricane season seems to be in full swing again. It rains intensely and it gets dark soon. This past week Floridians were bracing themselves for the arrival of Isaac, a tropical storm. Living as far north as Gainesville means that while it can get really nasty outside, I'm usually never in any real danger. The winds  will not be breaking our windows or flooding up the neighborhood. Still, I often get stranded indoors. Rain bands mean I have to cancel whatever it is I had planned for that day. Sometimes it's not even safe enough for me to get food. I'm not fast enough and far too exposed sitting down to roll around in the rain. It starts and it stops only to pick up again with no warning and for no apparent reason. In the past I had to deal with electricity outages for hours with food going bad and the refrigerator. These days I live by myself, so if something that extreme happens I won't even have a roommate to help me. Naturally, I prefer to be with other people. For as long as I lived in Gainesville, University of Florida has been converting some of the campus buildings into shelters, not only with students in mind, but also those in mobile homes and people who don't feel secure being by themselves. The ballrooms in the student union had reinforced walls and back up generators or so we were told. There was food, plenty of room to sleep and  safety- the police officers were with us if something bad was to happen. But the time to get there was limited. If the rain and gusts prove to intense the bus system suspends all routes. Also, a lot of times we've received warnings over the weekend, when transit goes out of service earlier anyway, so we needed to plan by anticipating what would happen anyway. I moved to Florida in 2004. Those who remember that year would say it was a pretty extreme hurricane season, if I'm not mistaken, we've had three in a row. That first week I was with my parents in Orlando watching blizzards moving down International Drive on TV, very close to the motel where we stayed. I was convinced it was just the irony of life- I flew in from Poland to die in hurricane just a few days later. As you watch the weather maps and things unfold on TV you really don't know if you should go hide in the bathtub already. It's a scary time for a foreigner with no such experiences. Plus, after you hear the stories of the elderly of people with disabilities getting injured or dying, you realize that being in a wheelchair puts you at risk if there's a need to evacuate for any reason. I can't run, I'm not as mobile, I will not be hiding under furniture or climbing through windows. Over the years, I've heard stories of apartments getting flooded, branches smashing windows and debris hurting people. It seems like Isaac was easy on us here, but still the intense cold rains make it virtually impossible for me to risk it and be outside. Seems like extreme weather is part of Florida's charm. Only last Monday I saw rains and winds so intense they were bending  trees and the world looking out of a window seemed to be behind a wall of water. I was outside only 15 minutes prior. Seems like batteries, flashlights and radios are things as obvious to get here as bread. And having mobility issues doesn't help. For that reason I will keep up with UF's monitoring the storm's path and if told I should seek shelter I will do so.

The Lawyer on wheels.

I try not to concern myself with what people may think. It's not my goal to impress anyone. But it took me quite a few years to finally accept that I'm my own person and I keep whatever company I choose. When I first came to America I really wanted to belong and find a group of friends where I could easily fit in. That was all these years ago. Today, I have friends from all walks of life. Straight and gay, younger and older, hipster and goth, I try to reach out to people in all places and feel comfortable everywhere I go. A friend recently told me how impressed he was seeing me transitioning between all those cliques, talking to everyone and never feeling out of place. I know that I'm different from most people I know. For one, I'm Polish and in a wheelchair. I can be loud and I'm very visible. But that's the way I am. People can either accept me or have an issue with me, whichever it is I will never change. And it's a great relief to not care so much and just be yourself. I'm surrounded by friends. I make friends everywhere I go, yet I'm an outsider. Not fitting anywhere completely gives me great comfort of being able to interact with different groups and just being me. To me, being different is not necessarily a bad thing. It gives me a unique perspective. "You've built quite a recognizable profile" said a friend to me once over drinks and I do think he's right to an extent. The key to succeeding in Gainesville, in life really is being able to navigate among different people, getting their respect. And turning your circumstance into something positive. I see everyone as human beings, I relate to them on individual basis. Their stories, hobbies and inspirations are fascinating to me. I could care less about their subcultures and how they choose to label themselves. The reason I have a group of diverse friends is because they are fun to be around. But I will never be like anyone else and with this comes a realization that no one will ever understand me fully.

 What is it like to be me? I'm never lonely, but in my struggles with disability I'm alone. And it takes strength that nobody else can give me. Sure, my friends may get upset that a  place is not wheelchair accessible. That it doesn't have a ramp. That it doesn't have a bathroom I can fit in, or if we're out that I can't roll up to the bar. But it's not their fight. It's mine. Sure, it's nice that they understand and support me, but they're not the ones that have to think about those things 24/7. I do. If they so choose they can just leave me behind and go to any place they desire without a problem. But again- I don't mind this. Not only because I try to put others before me, but I have a great passion for making a change and I have a will of a warrior. My mother used to say that only the parents of people with disabilities can understand what it's like. And she has taken on a lot and sacrificed even  more. Yes, she understands struggle, but her perspective is different than mine. When I was a child although she was with me most of the time if she went out without me then the stairs, accessibility, curbs where not limiting her in any way. Wouldn't it be nice if I could take a day off from Cerebral Palsy? It's true, I don't mind it most of the time. You can say that I never walked properly so I can't really miss it. But that's not so. I know what being different feels like. I have met people with disabilities who choose forever to be single. I don't support it, but I understand the sentiment- if you're forever alone in your mind, in your struggle, what is the point of having someone else involved? I'm happy. I'm driven. I chose to celebrate not so much the things that make me different but my life. But in when I push myself, when I win or lose with my body, I'm alone.  And I accept it. Be as engaged as I can, with this somber realization that there are aspects to me others will never relate to. 

Paralympics

The BBC launched 24 satellite feeds to cover the Olympic Games, all free-to-air, accessible across Europe and most in High Definition. Polish Television repeatedly was running out of airtime to put commercials in and apparently did everything from interrupting tennis matches to delaying live coverage to appease sponsors. The Hungarians unencrypted one of their channels, so that people abroad could follow their national team. Polish Public TV did exactly the opposite- and scrambled their usually encrypted info channel citing licensing limitations. American TV station NBC famously delayed the broadcast of the opening ceremony so more people would watch it at home with an impression that they are seeing it first as it happens live. The point is of course, that the London Games were a big thing. A huge media production, with a lot of built up expectations from the competing states and disappointments when the national teams did not deliver.  You could write a book about what is wrong with professional mainstream sports today. That’s why I rarely watch it. With all the money, sponsors, expensive training trips and methods, injections that can block the pain and tabloids that can tear you to shreds for disgracing your country, where’s the fun in that?  Doesn’t it feel a tad mechanical, like a factory of medals?  Few remember that way back when Olympic Games used to feature amateurs.

But there are different games, set to begin on the 29th- The Paralympics. While UK will get a slightly reduced coverage on four Channel 4 feeds, Polish Television is set to only show bits and highlights with nothing broadcasted live. There was an online petition floating around the  internet urging NBC to show the games  and I wouldn’t hold my breath that it was successful. This event in contrast is not generating a huge media buzz, every reporter in the world does not what to be there for the adventure of their life, TV stations are not competing to show it, advertisers are not killing themselves to get their ads in at obscene cost. There seems to modest at best interest in the games and I guess the feeling is viewers would not turn to the channel showing the games. And I really don’t understand why. Would people really turn away from watching people with disabilities on air? To me those are the more interesting of the games with the concept truer to the original idea. People with limitations pushing themselves further to accomplish  greatness. To raise above physicality, to have the mind conquer the body. They  don’t have the huge corporate machines behind them, but they have will and dedication. Why isn’t this beautiful?  It seems as much of a personal challenge as it is a competition with others. My body doesn’t own me, I own it, and there’s nothing I can’t learn or train myself to do if I push myself. Isn’t it something András Pető would say. A celebration of human spirit. If we move away from counting medals and focusing on the gain/loss analysis, perhaps we can appreciate the people and enjoy the sport. Giving a wide exposure to those great men and women with disabilities could bring awareness to the disability causes. It would show is that we all have our struggles, we are all very much like everyone else. The more you’re exposed to something, the more normal it becomes. Quite honestly I care about this more than the really tall man with long arms winning yet another swimming medal. Is there something shameful about having a disability? Are they not sportsmen like the ones worshipped in July?  Are their accomplishments less worthy because they are blind or in a wheelchair? Seems like that’s the message. Clearly they are not worthy of airtime.

True awareness

My interest in disability law isn’t just something I invented or myself while I was figuring out what career path to take and weighing my options. It’s a legitimate field of concentration for any attorney. It’s an area, first and foremost, where people often don’t know their rights, are often neglected and mistreated that could involve anything rom building accessibility to education and employment. A fascinating scope for any lawyer, yet not that popular as a career choice.  I don’t think I’m special in that regard and I’m sure there’s plenty of people in wheelchairs facing some of the same issues I do every day. Yes, I might have more of an insight  into ADA related problems  than some of my able-bodied attorney friends, because my perspective it’s different as I know how to watch out for these things. If you don’t have a reason to spot them you will most likely miss them. The truth is, unless you have some reason to try and see the world from a wheelchair perspective, you will most likely not know about half of these things. A human reaction really. I don’t pay attention to a host of other people’s problems I’m sure. I don’t see a lot of them or never even thought about them, because unlike disability it wasn’t my experience. But then I’m made aware and I start to notice. My mom points out that this could be my niche. As this is a frequently overlooked field that can produce a consistent supply of cases and clients I have an all too visible personal reason to want to do this. But to me it’s not so much about being able to understand ADA better and have empathy for my clients’ concerns. It’s that ADA and its application concerns me today and always will.It’s more than a clever concentration, it’s my life. And getting people to care feels like my job. A lot of times I feel I can’t even make a dent in the wall trying to break through to the other side get someone to understand. But sometimes it feels like I did something right. A lot of my friends often say: I never paid attention to any of this until we spent time together. Or: I never knew how difficult it can be for you to just get around. One of them rented a house and was very excited to report that it had a ramp and I could visit her often. Another took me to the movies a few weeks ago and was amazed how I needed to go around a building to get off the sidewalk to the theatre and then I would roll through traffic. Because when you walk you really just go forward and there’s no need to pay attention. Someone who is a flight attendant was outraged to discover that elevator at their airport was all the way on the other side, a lot of time and effort wheeling back and forth. Not something you think about when all you had to do is jump on the escalator. A lot of bikers commented after my article about how they block wheelchair ramps and sidewalks that they simply didn’t know. One man told me that since he walks everywhere he never had to care where people tied their two wheeled vehicles as he can simply walk on to the street, but that it opened his eyes. A lot of my friends now pay attention to ramps and curb cuts, where they are, how visible and how far from each other. Often, I’m not even there. Many report things they found absurd. When a friend was driving through a neighborhood of white picket fences with  stairs in the front she wondered how I would get inside and it made her upset. That is my little victory. To get people to care about things they wouldn’t otherwise and feel passionate about it. You can fight the requirements or you can follow them either out of fear of losing  business or a  strong personal belief.   Because ADA will never truly work as long as people will simply view it as a nuisance, a technicality, something you need to get around. They need to see it as something that transforms people’s lives, reintroduces them to the society, allows them to be productive and fulfills their goals. Let’s be honest: People in wheelchairs are not large enough of a group to have a shopkeeper consider putting in a ramp otherwise not required by law. The cost would be too great and gains probably minimal. Nothing you can’t afford to lo  lose if it was optional. But to have more and more people have a strong positive emotional  reaction to it is priceless. It’s more than any penalty or lawsuit can accomplish. The true awareness comes from people becoming strong advocates for a cause that is not their own simply because it’s the right thing to do rather than fear of consequences. And this has to stem from getting the concept to spread in the local communities. Quite simply, sooner or later we have to get people to care.

Tragedy of lawyers

I saw a man at Starbucks yesterday. He was sitting a table away from me and I could hear his conversation pretty clearly, without even trying. He was meeting a client at a public café. I tried not to listen  and give them their privacy as I was sipping my late, but they were not really keeping it down. “I’ve been doing DUI’s longer than anyone in Gainesville” was the one sentence that stuck in my mind. He was trying to get the person he was meeting to agree to whatever course of action he decided on. “But it’s your money” he concluded. He was a middle-aged man. Dressed up, looking professional and presentable, grey hair matched his grey suit. You could tell he was not new to this game. Yet, instead of his office he was meeting a client at Starbucks. It must have been before lunchtime and if I were to guess, I’d say the place was chosen to accommodate the person he was advising. That’s the tragedy of being a lawyer, especially if you have your own practice. It doesn’t matter if you’re 30, 40 or 50. You’re always on the look out for the next client and you’re eager to land one. Because we all have bills to pay. And it never stops. I was lucky enough to take a “Law practice management “ class back in school. It did exactly what it sounded like- showed us how to start our office. The gist of it was about keeping track of our own time, setting up and yes, billing people. My professor, an accomplished local attorney, encouraged us to always bill people, friends and family alike, even if we were to give them a 100% discount. Only then they will understand that this is your work, this is what you do and it takes a significant amount of time and effort to structure a case. It also requires a lot of commitment. People often don’t understand it, asking for legal advice on the fly. But if they will see it listed out on a bill, with every thing done itemized, they will see what we do has value. Only then will respect it. I have a lot of friends approaching me with their bigger or smaller issues, expecting more of a ‘quick fix’ than actual representation. And I try to help as much as I can  but mostly I tell them to get an attorney. Because as much as I want to help people, if I would never charge anybody for my time I  would never have any money. I do have bills to pay and these are actual bills and rent that I pay every month. And sometimes, after a slow month I still have to ask my family to help. I hear about those rich attorneys who really have made it. Good for them, they worked hard. But I know more struggling ones that are just trying to get by.

What is really tragic about practicing law is it seems that a lot of our work stems from heartbreaking personal drama and turmoil. And we profit from it.  When I saw online pleas for attorneys help in some really painful situation, I used to think: Be human, just help them already. Make an exception, don’t you have a heart? But now I understand that attorneys big and small only have one thing of value: their skill and can only profit from the time they put in. If they all just made an exception for every person that genuinely moved them they would feel better about themselves, but they wouldn’t eat. It’s not that the moving stories of people looking for pro bono help don’t grab my heart. You wish you could do something to take away their pain, you really do. But I’m not established enough to afford it. It’s really not about being greedy. Books that teach new attorneys how to set up an office say that it takes a year if not more after setting up the practice. And it’s a continuous process, you have to attract new clients every day. Some will never go forward, many  will change their mind in the middle of it all. This is what we spent tens, hundreds of thousands of dollars in education money. Many of us are still in debt. There is a website called Avvo, where people with legal questions try to get as much information as they can and attorneys do what they can do reveal as little as they can for free and have them call them. The goal- to land that client, to show him he needs to hire you.And that never changes. Thirty years from now I could be at that very Starbucks trying to convince a young student  to get me to help him with his parking tickets.