Thursday, September 29, 2011

Never, never, never quit

There are many people who get what they want at the very first try. Good for them. I'm not one of them. It took me four years to finally resolve my immigration situation. And look at me now, turns out I can be pretty useful both as an advocate for people with Cerebral Palsy and an attorney with an eye for disability issues. I wasn't admitted to American law school with open arms either, but it turned out that when given a chance I can deliver, having a couple of book awards and Dean's letters congratulating me for being named to his lists as proof. The bar card wasn't exactly handed to me, but when I got it I knocked it out of the ball park. Living in fear of immigration and uncertain of the future I was surprised I was even functional enough to take any kind of exam. Don't get me wrong, I never did anything illegal, but sometimes your life falls to pieces even if you do everything right. People look at me and see a Permanent resident, a person in a wheelchair in a highly respected  profession and don't even stop to think that there is a back story to all of it, filled with stress and doubt and second guessing myself. But I knew I had to go forward.  Sometimes I asked myself, why am I doing this, am I just being stubborn. Why am I fighting so hard and how can it be worth it all this  struggle? But this was my life and my dream and I was going to hold on to it with all I got. Because I have gone so far and I have changed so much, how could I just go back to Poland to who I was as if nothing ever happened? Did I know it was all going to turn out okay? Of course not. Not a day goes by that I don't think it easily could've gone the other way. But what would I ever accomplish by quitting? I'm always very surprised that people are impressed that I went through it all as if I had a choice. I had nothing to lose and everything to gain. It did take strength I didn't know I have.
I  don't know if it's a lesson of Conductive Education or just my mother's determination rushing through my veins. During my years in Budapest you worked hard, you tried harder. Sometimes you fell down, only to get up try harder and reassess. I had blisters on my feet and rough skin on my hands from walking with sticks and braces for hours, but you don't quit even when it hurts, because accomplishment feels good, today and 20+ years ago.

Tuesday, September 27, 2011

Lawyers and the Masters of the Universe

The first thing you see when you look at me is my wheelchair. Over the years I have changed in so many ways it seems, internally, but to many I will always be what they see on the outside. "When can I finally expect respect?"- I asked a friend of mine when I was sharing with her my frustrations about perceptions of my disability. "You can't"- she said, "You must demand it". And I think she's right. It became a bit of a cliche to talk about education as the great equalizer, something that levels the plane, but I think that's true. I have been given the tools to raise above my disability with my God-given intelligence, wit and knowlege. The greatest and the missing piece was granted by the Florida Bar. I am not an intimidating person when you look at me. It is funny however how people all of the sudden sit up and listen when they learn that I'm an attorney. That I have been given this authority by the State to alter people's lives. That I'm a professional and I mean business. Not that I want to scare people into submission or that I enjoy seeing people impressed by me, but it is funny how perceptions change at that very moment. It was surprising to me at first. I was trying to resolve an issue with a local transit system in which disabled patrons were given false information about what ADA allowed them to be provided with, and apparently this was going on for years. Initially they were dismissive but that all changed when I told them I'm an attorney. Attitutes turn into more apology driven panic. Because I know what I know and I will not be lied to. Funny thing. I didn't have to do much to get there. No muscles flexing or angry tone. In 1980's cartoon, "He-Man and the Masters of the Universe" a boy gets turned into a superhero with the help of a magical sword when he utters "I have the Power". My law license feels a bit like that sword, a great accomplishment and a great responsibility and I have the power to better people's lives. To help them raise above their disabilities. I have no control over what people see what they look at me but they will respect me.

Friday, September 23, 2011

I was nominated for the Spirit of Gainesville award

Please read the nomination on the Gainesville Sun website I'm not a big fan of such contests but I don't mind this submission because it may bring more exposure to our cause and help more people gravitate towards Conductive Education. I'm not doing it for personal glory but more awareness of the the disability issues is what I've always been after

Thursday, September 22, 2011

Between help and independence.

When I first landed in Gainesville I was determined to show my parents that I can do everything by myself. I remember how my gloves tore and my hands would bleed because I needed to get up every hill without anybody's help. It felt like my own manifestation of independence, I thought this was the time to live the live I always wanted and not rely on others for help. If I was going to this, if I was going to make it work it had to be my way this time. My mother thought I was stubborn and silly. It wasn't practical to do things like that but I wasn't looking for the easiest route. That was the point. I came from a country that didn't really allow me to do much without help and even at home when was a child my parents would sometimes override my independence by putting my shoes on or  bathing me because it's quicker, because we were in a hurry. Intimacy is a bigger issue when you feel you have so little control over your life, your holding on to whatever shred and aspect you can.

I really felt useless in those moments and having remembered that emotion I vowed to do everything I could by myself. Rolling up to some place and taking a lot of buses just to get somewhere would take a lot longer than having somebody push me or give me a ride but that wasn't the point. A trip to Walmart took hours, but it felt good. I  needed to show that I'm not useless. There's a blurry line between being independent and needing help. People often tell me that they don't know how to approach people in wheelchairs and would it be offensive if they offered help. I used to say it's always OK to ask and it shows consideration. Now I'm not so sure anymore. Because I've been in both situations. People mean well and want to help, but sometimes if somebody approaches me three times to assist me up the hill and I feel so proud of myself for making it I think- do I really look that desperate for help? And there are times when I'm stuck in a ditch or my front wheel falls off the sidewalk and I'm glad somebody cares enough to stop. But then when somebody asked me last week at the student union building if I was lost, I thought to myself that I've known it well for the last seven years.

It used to be a big deal when somebody tried to push my wheelchair, I had to know that person really well to be comfortable with it.  It felt like an invasion of sorts of not only my personal space but my physicality. Now I let my friends do it often and it's fun. I used to love grocery shopping by myself, just making it to Publix felt good. Now I go with friends, it also feels good and it's a whole lot faster. Because for once I don't have to prove anything to anyone. Starting to know your worth, boosting your self esteem, that I thinkk is the biggest gain in living, making it abroad for seven years, rather just finding a nice place to live.

Tuesday, September 20, 2011

We don't see, don't notice, don't understand- we need more awareness

Last week when I was coming home from a bar at night, a man who was taking pictures across the street stopped me and offered me bred if I waited a few minutes. A few days before that a motorcycle parked on the sidewalk was blocking the access ramp to my apartment, forcing me to go around the complex  and just the other Sunday I almost injured myself  going down a steep ramp to a local theater because bicycle riders tied their transportation to grab bars on both side, ignoring the painted sign DO NOT BLOCK. I'm sure these people didn't do it intentionally. I think the photographer would have been very embarrassed had he known I'm an attorney and not a homeless person in search of food.  The people tying blocking the ramps would've been very apologetic, no doubt had they seen me struggle to use it. It is never a good excuse, but we just don't think, don't see, don't notice. And then we assume, which is even worse.  It happens all the time and I doubt it will ever stop. To some extent we all do it.  When you have a disability, your needs and perception changes depending on what it is. As problems and challenges differ from person to person that's what makes this group stand out from other more uniform minorities. What I as a person with Cerebral Palsy need and require may be different from what a man with paraplegia needs. A friend of mine is fully functional from his waste up. I have poor posture, my right side is weaker and proper balancing in a chair and maintaining a position can be a problem. He needs his standard ADA grab bars at mandated angles and proper dimensions. For me the often get in the way. His body strength allows him to compensate for tte greater than standard angle on a bus lift. For me that becomes a problem if I'm leaning back. Not to mention that my friends who are blind feel safer with a tall sidewalk edge, while I'm looking for a ramp and the bumpy surface that supports their orientation is often a problem for my wheels. For that reason I don't think there can be any universal "disability advocacy", the way similar to how issues of people of different races, sexuality or gender  but we should all try to be more understanding and considerate.   And I think this is how awareness spreads. I noticed that by spe3nding time with me my friends learn to pay attention to more details and try to adopt my perspective. Would Ralph be able to access this? Reach this? Use this? And I think this is how change comes about, through education and understanding.

I'm not trying to write a book, become a motivational speaker, end up on Oprah or publish a memoir. I have a career. But my perspective comes from my experiences with my disability. Yes, I'd say it gives you a different kind of understanding, if you lived through it, if you are what you preach. My goal is to improve the life of people with disabilities, but by the same token I'm also improving my own life because I'm as affected. We need more awareness for all of us. If my parents, my entire family and then I worked so hard to make it better wouldn't it just be a waste if I didn't in turn try to better other people's lives? I'm not saying I'm at all extraordinary. But if my experiences, the sacrifices we all made can be useful to anybody- use them

Sunday, September 18, 2011

Another picture of me from Budapest

Pictures of me from the Peto Institute are quite rare. The Conductors didn't like to be photographed at all, parents were not allowed on the floor to witness any of the rehabilitation sessions as if some kind of secret ritual was taking place behind closed doors. My father was quite persistent and he loved his camera so he did snap a few, but there's more of me walking, standing, posing in my braces and with sticks on my time off from the facility. What this does is explain a bit the mindset of my parents. There was no resting, there was no weekend off from rehabilitation. They would always put me in braces and have me walk around the apartment or to some destination as a challenge or just have me stand or lay in them while reading or watching TV. And this is how you improve; This needs to become a part of your life as obvious as brushing your teeth. This picture is quite taken early on, I'd say 1987 or '86. My first sticks are in it - they were wooden and with a fixed length so I quickly became too tall for them. We quickly progressed towards expandable metal ones. Also my first leg braces, with leather straps made of synthetic material before we got the heavy ones made of metal that folded at the knee.

Tuesday, September 13, 2011

Step three: Getting the right people to work with you.

You run a run profit in most areas like you would a for profit corporation. Yes, passion and ideas are very important, but having a noble cause will not get you to the next step. Every Foundation needs a devoted team to run it in every aspect, it needs to be in sync and run like a well maintained machine. I can't say it enough: You may be small, but you must be professional. If you are not effectively managed you're losing chances to draw others to it have them understand the goal, to get donors that will fuel your programs and ultimately to help people. To make a difference in the lives you're doing this for. Because it can never be about the people behind the scenes, we must never forget we're not doing it for ourselves.  Our cause hurts if people don't hear about it. If we can't convince parents our approach may give children with Cerebral Palsy a chance at a better life. If we can't appeal to donors to trust us, believe and understand that we're doing good. If we can't get the hope and awareness to spread beyond our circle, beyond Gainesville and even Florida.

The Klauners didn't know that I've had enough experience in a lot of areas to identify potential problems, aside from being a lawyer when they first met me. I used to be a media writer and owned a popular website in Poland, we had our own dedicated servers and also hosted other sites. I started a disability foundation in Warsaw; I've dealt with enough marketers and webdesigners to understand what I think should happen. I can't do it myself, but I know who to reach out to,what I like and what I don't like. I'm only one person, and I'm a big fan of getting professionals in and delegating tasks to them with me providing just general feedback and direction. I think I have done all I could do to promote this by myself. If you're alone, it's chaotic, it's not planned and focused as it should be. That's why I insisted we'd work with a local PR firm, Greenberg Communications. This cause, this story is too big to be Gainesville's best kept secret anymore. As we go further we need to move away from people volunteering their time to people providing professional support. Otherwise we will never grow enough to reach the parents, the kids lives of which we should be altering and connecting with the right kind of grantors and donors to assist us. I have done as much as I could, but to get to the next level we  need help. To include, to delegate, to do whatever needs to be done so our message spreads. I think I've done a lot exposing many people to issues of people with Cerebral Palsy, with disabilities in general and introducing them to the concept of Conductive Education. They understand more, they continue to be involved because they met me, they see what it is. We have met people, networked and inspired others to act. But you can only give so many speeches and have so many meetings and only do so much without a budget. Our cause is more visible than when I joined it, but it's not enough.

And I said it before: I will work with every marketer, writer, grant writer or journalist, anyone who can help us spread the word about our mission, who will assist us on our way to do what needs to be done.

Monday, September 12, 2011

There can be no price tag on the comfort of living.

I have been so much happier ever since I moved into my new apartment. It is not the extra room so much, it is not the additional space. I'm finally in a place where my own home is not attacking me, where I can safely get around and get to every corner, where I don't feel I'm sacrificing my own well being to save a hundred dollars or two. My old apartment seemed like a cute idea, but it was never a good solution for someone in a wheelchair. Originally it felt appealing to have a tiny place, I thought as long as I can roll in and out and somehow fit in the kitchen I'd be fine. One thing I didn't count on is how much I'd end up hating living there. You see it was one room with a window, something they call a tiny "studio" a bathroom, and an additional chamber that served both as a closet on one side and some type of kitchen imitation on the other with very limited counter space. My chair would barely fit and they had to remove the folding doors from the closet to make more room for my arms. There was something appealing about scaling down and the studio wasn't cheap anyway. I can swing it, I thought as our kitchen back home wasn't that much wider. But as I enjoyed the idea of not blowing extra money on a bigger apartment and also feeling a bit like the semester I moved to America when I had two cups, two plates a cereal bowl and few pieces of silverware I was spending much more eating out.  I didn't cook in, there was no room, an honestly the whole set up made me very unhappy. I felt like I'm locked in in something that gave me a feeling of a bunker or a basement.

 There was just no making it more homely. My parents came over during Christmas time and worked hard to make it more accessible and to give me more storage by getting shelves on every wall. It wasn't worth the exhaustion. My dad paid the high price of having a heart surgery few months after returning to Poland. And still, in my mom's words it was a fox hole. What I wasn't counting on is that how you feel about yourself, how you feel about your disability has everything to do with how you feel  about where you are. It was a depressing place that many have felt claustrophobic in and it didn't make me feel that god getting up in the morning. When you are in a wheelchair you need space to get around, you need storage space you can reach, you need kitchen you can actually work with.  I haven't been going out at all, I cook my own food and it saves me money. I forgot how much I love going grocery shopping and having friends over for coffee. Now I have room to be social again. Bigger places are easier to keep reasonably clean, which I found surprising. In smaller places things pile up much easier. Between cables and things you didn't put back in their original spot it is harder to get around sooner even to clean. It gets more difficult to tidy up to reach, grab and put things away in small areas because there is no room to go in and turn around. Now, my old apartment would probably fit in my living room. And I feel happier because I can do more. The funny thing is, I moved only three doors down and it's an entirely different standard of living. And I realize how the toll that other place had on me. Trust me, some things are not worth the sacrifice. Your well being, your happiness, your piece of mind. 

Thursday, September 8, 2011

The wheelchair was my boogeyman: Is Conductive Education at war with independence?

"It's much harder to work with children once they sat in the wheelchair" says our Conductor Kata and I can understand that sentiment. There's less of a drive to stand, to move, to walk once you adapted to this new setting. We all get comfortable and a little bit lazy sometimes, while they key to Conductive Education is putting your body to work. I guess for that reason my parents have used a stroller with me until I was 12. That way it felt like a temporary transportation device, something that we used to get me from one place to another while I'm learning to walk. To us a wheelchair felt like giving up. When you get to a point that there's nothing else you can do, that you're too big and too old to improve. It was a symbol of resignation and defeat. My parents have also used the concept of "ending up in a wheelchair" as a way to scare me, to motivate me to work harder. As much as I love them and I'm grateful for what they've done for me, I think they made a mistake with this one. For me a wheelchair was something scary and final, something unavoidable and no eight year old should ever have to deal with those thoughts. But, when you think about it, popular culture is pretty much on the same page and has for ages. A wheelchair is so dark and makes you so powerless that even Polyanna couldn't cheer herself out of it. As a consequence, there was never much of a drive to have me do things for myself in the kitchen or outside of the house, so I didn't get used to doing things in the wheelchair.

Conductors in Hungary where the same way. I don't know what they're doing now or how other centers around the world are approaching this issue, but in the Peto Institute in Hungary they would always butter our bread and they would make us sit in the chamber pot although I have been using toilet at home for years because it was faster. We were never learning things other kids  did with their parents every day. To me it felt like the Peto method was at war with itself. Working around your disability in my mind also means making your own sandwich and going to the store and getting things done. At the Institute, outside of rehabilitation there was little to no drive to independence as things were done for us and there was no expectation for us to do them. . I don't know if the idea was that I would magically pick up those every day skills when I started walking. It was my parents who occasionally would bring out products so I would fix my own lunch. We didn't really have a proper set up at home for me being in the kitchen until we adapted it a bit so I can reach stuff from my wheelchair.

Also, the boogeyman, the wheelchair... I could've been so much better, so much faster in it, if it wasn't for that fear of what it means. I first started using it by myself at my highschool indoors when I was 15. Initially, I would insist to transfer before every class. Then at Warsaw University I would go out a little bit by myself or use paratrasit to go stores and cinemas. I didn't use it extensively until I moved to America at the age of 25. I had to become independent overnight, get to places and do things by myself, in that chair. I never had to rely on my muscles as much before, every day was an extreme work out.  My "boogeyman" is tailor made, Swiss. Carbon fiber and titanium. Nothing like those large heavy things you see at hospitals, bright yellow. It is not a sign of resignation it is a manifestation of my independence. It is what enables me every day.
To me being able to do things for yourself while physically improving have to go hand in hand. Otherwise you're slowing your growth. Developing in some areas while staying behind in others.

Tuesday, September 6, 2011

A quick guide to apartment accessibility

There's a lot more that goes into choosing a suitable apartment for me than the number of rooms, last month's utility bill and the size of the fridge. I'm in a wheelchair and I believe that  my home should be the one place where I shouldn't have any problems getting in and out, using the restroom and kitchen without a risk of injury, things falling on me, being to high to reach or otherwise attacking me. I don't necessarily mean ADA [Americans with Disabilities Act] compliance either. In fact, I grew up without any grab bars in our home in Poland, which is probably a good thing because public places during the communist period didn't have them either. Instead, Conductive Education, the rehabilitation method from Hungary gave me a pretty good understanding of how to use the limited functionality of my body to get things done. How to stand, lean against the furniture, the sink, the wall, to get into the bathtub, on the toilet, how to shift my balance. What do you do when the grab bars are not there? Sometimes you would even get on the floor, kick the wheelchair out of the cabin just to do what you came in to do. It's not only a historic problem of 1980's Poland. Recently I had to use the restroom at Gainesville's Hippodrome Theatre. After finding no "special bathrooms" I used the regular one. Often I even prefer the grab bars not being there, because they were not custom build for me, the angles and points of support are not where I would like them and they just get in the way. But no matter how functional I am if things are to high for me to reach, sitting, standing on spastic knees or kneeling I can't use them.

The biggest problem area have always been the kitchen and bathroom for me and that's because they come with things already built-in. Some apartment complexes have wheelchair accessible units, but that usually means a roll in shower in place of a bathtub. Even in apartments that had those modification with one [if there were more than one] bathrooms larger for a chair to get into the shower, the so called common areas [cabinets in the kitchen, thermostat, the chain on the door, etc] were not lowered. Back in 2004 when moving to America out of the dozen if not more complexes I visited I only saw one that had the top cabinets moved down. It's my house, there shouldn't be anything I can't get to!

I moved a month ago. The extent of modification tat the manager of the property is willing to do changes from person to person, but here's what we all found was reasonable for them to do.

Kitchen: Having no use of the top cabinets because I can't reach them is not only frustrating but it cuts my storage space in half. Having them lowered as they are supported by the celling would require some heavy construction, so we agreed to put some extra shelves in the large open space above the sink, directly underneath them.

Bathroom: I need two points of support to get on the toilet from the standing/kneeling position. I prefer having the toilet that I transfer to supporting my left hand as my left side is more functional.  American sinks are usually a good point of support for the other hand, because they have cabinets built around them and are very sturdy and secured to the floor and wall . However, in my new apartment the sink is on the further left. I lean on the bathtub on the other side. We replaced the abnormally high toilet that was there when I moved in. It was extremely high for me to get on, taller than the standard, making it difficult for me to pull myself back on it and the bathtub, which is typically very small in the US gave me no support.   I would have to put my shoes on before entering to gain a few centimeters in  height. After that old toilet flooded my bathroom a few times [leaky tank at first, then it dripped from the wall] and given my accessibility problems the maintenance replaced it with a small one that is as small as the bathtub, also giving me more room to maneuver, although getting it secured  to stop rocking took a few days.  I really like that American bathtubs are small enough for me to crawl into, by pulling my legs in when waist up I'm already in.

The thermostat. They had to lower it and paint the wall in the old spot. You can't read the setting on an electronic display if you are not looking at it from the right angle.

The fan/light pull switches. The chains hanging from the ceiling lamps operate the fan speed and lights. More advanced apartments have them as switches on the wall. The chains were too high for me to reach so they've extended them.

The walk in closet. There is never too much storage space when you are in a wheelchair, because you can't really pile things up high. American apartments often have a separate chamber with a door for clothes. Mine only had a wire rack for shelves on the back wall, I asked them to put things on 2 others.

Garbage. As you can't get to the dumpster in a chair because of the fact that the street is historic and there's no ramp to it, the maintenance will pick it up if I leave it outside the door.

Parking.  My apartment requires residents to have passes assigned to their cars for parking, without the fear of getting towed. I don't drive but people often give me rides and they stay over. Persons and cars change so we had to figure out a removable, more generic pass

<<Washer/Dryer. My apartment doesn't have them.  Some apartments come with them, some have hookups for them, but my complex has a laundry room where you operate the machines and pay by the load. I found it's easier for me to use a portable washer and dryer. They are small and click into your faucet.

Friday, September 2, 2011

Education Continuum

Cerebral Palsy never goes away. You have it from the day you are born until the day you die. Attorneys on TV tell you who to sue if your baby has it. There are charities that raise money for prematurely born infants many of which will be diagnosed with it. There are schools and centers that will provide rehabilitation and education . But as your child grows older, what kind of support does it get? Where is it coming from? That seems to be the strangest thing. Organizations that are picking out segments of a child's life. "We can only help your child if they are ages X through Y". What happens next? You go elsewhere. Or nowhere. But one thing is certain. Cerebral Palsy children become Cerebral Palsy adults. And they somehow disappear off the radar because perhaps they cannot drum up enough support and media attention. The only times that you hear of adults with CP is if they accomplished something amazing, or when something happens to them. Recently Gainesville newspapers reported that a Cerebral Palsy man was robbed. Where is the awareness, the support, the information about the needs of individuals with this condition as they grow older? The same is true about any permanent disability and all those age divisions seem artificial. Conductive Education is a good start. How effective it will be depends on a lot of factors (age, extent of disability etc), but chances are as they grow older children will remain affected one way or the other, be it about how society perceives them or how they go about enforcing their nights. The nature of the services they need will change from physical - you work with children to be as independent as they can be to assisting- you want to empower people as they are older. That's how I see the Jordan Klausner Foundation- as people's needs change over time we adapt to address them. It feels like an organic process, I call it, Disability 360". My friend called it Education Continuum, because it never stops, it just transforms. There can never be an artificial cut off point for anybody, because how can you cut off hope? CP is scary enough without having to worry about the future, where you are too old or too heavy to be dealt with. I want this to grow; There needs to be a model that we can adopt that provides those services, but then expands its footprint. It has to start somewhere, why not Gainesville?

Conductive Education is a method designed to allow individuals with Cerebral Palsy work around their disability, minimizing its impact through specialized rehabilitation. I want to use the same general goal: enable people to do things, limiting how CP affects them but using different tools. I guess that's why Joshua Kaller called this Education Continuum, because it's taking Conductive Education principles as a starting point and applying it beyond pedagogy and upbringing. I want use schooling and law and awareness both of their rights and others' of their needs to allow people with disabilities to be able to succeed in spite of their condition.

Thursday, September 1, 2011

Our amazing Volunteers.

We wouldn't be able to do what we do, if it wasn't for the amazing volunteers from University of Florida and Santa Fe College that help out every semester and high school students that join them in the summertime. We are a small operation, we only have one conductor. Someone has to work and play with all the kids in the class and while we would like to afford to have more professionals aboard, we have to rely on limited resources we have. Somehow Kata is able to get the students to do exactly what needs to be done. She's a great communicator and knows how to excite and motivate not only the pupils in her class, but also the young men and women that come in to learn what Conductive Education is but also to help children with Cerebral Palsy become more independent. The faces change frequently, but many feel inspired enough to return every year.  The volunteers are also the ones who help us with fundraisers and getting the word out. They reach out to donors, parents, musicians, plan events, offer art and music therapy, design posters, plan picnic and pool days for the children and most often leave amazed and full of enthusiasm.  One of our former helpers decided to quit her major in occupational therapy because "Conductive Education is so much more useful". This year, we decided to tap into the UF community even more, when we created a student organization affiliated with the foundation. Deanna Pate was a freshman when she became the president of "Gators for Conductive Education". It's new, but it's growing, and we are looking for UF students to join us. To spread the word, to have a great adventure, to recruit new students, to help us help more children with Cerebral Palsy