Speech.

Consider this. On Saturday morning an audience gathered in a lecture hall near Munich to hear me speak about my life with Cerebral Palsy, my take on what I benefited from years of rehabilitation and how I became independent. You'd think that after inviting me as a keynote speaker and days of presentations on disability inclusion and integration they would find a way to get me up on the stage. When you're up on the podium you lecture, you're the speaker. The attention is on you-Norman Perrin said- and it's hard not to agree with him. When you're sitting next to the stage, you're just a guy on the floor- speaking. I didn't really mind, but I think it's a bit ironic and serves as a bit of a commentary on the state of things. You invite a man in the wheelchair to speak, you have months to prepare and when he is there to deliver, you don't know what to do with him. At the last minute they bring a table. They want to give me a microphone to hold, but I prefer to not have things in my hand. They finally get me some kind of mic stand and I was able to present. And boy did I deliver. This may be the least modest thing I have written in months, but I think I did a got job. After watching people for few days doing nothing but hiding behind their  power point presentations and reading from them I wanted to do something different. And I guess what I was about to do would have been different either way. My talk was about my life. My parents and what they have sacrificed their health to help me improve. My drive to independence. How we insisted to have me attend a "normal" school in 1980's communist Poland. How Conductive Education gave me a better understanding of my body and balance and some 25 years later I still manage in places like unfamiliar airport bathroom in Frankfurt. What the Hungarian experience was like. How I felt being in the Peto Institute. The first night there. My first consultation before I was admitted. How loving and encouraging the Conductors were, some of the things I remember. I didn't write out or memorize a speech. My Trial Practice instructor, Carl Schwait, would have killed me had I done so. Never read when you present he would say. But learn to transition between your points with an ease. Learn to talk about it. Be familiar with your material. Of course there is a difference between presenting in court a delivering a lecture to a group of people and there is a difference between talking about a case and some deeply personal experiences. But I felt good doing it. And I was running out of time, but I could go on and on. Some people have asked me if they could see the written version of what I've done in there, but it doesn't exist. All I have is my conspectus.  And the whole thing was of course recorded. After the talk, a woman from a CE center in Chicago approached me to see if I'd be interested in perhaps doing a fundraiser event with them. And I have always said I'd always be willing to do things like that, just point me in the right  direction. I also need to thank Susie Mallet and Andrew Sutton for insisting I was included in this and making me a part of the world. But I want to do more and more- just keep coming up with ideas.

Doom and gloom

This is the second day of the  Conductive Education World Congress and the second day of listening to some odd statements about my own disability. Yesterday a man presented his research part of which dealt with how adults with CP assess their own quality of life and how they enjoy it. "This data shows, that you don't have go to a university, you can have CP to still find joy in life". I could say of course, that I do have CP and not necessarily the mild form of it, but I did go to a university and
I have three law degrees. I'd say my self esteem and perspectives where only enhanced by it.  The problem I saw in a lot of those presentations is that nobody really expected the people with disabilities to accomplish much and amount to anything. As if the only goal of the rehabilitation process and the most you can get out of an individual like me is getting them some degree of functionality and have them  enter the workforce on some lower level to be productive. A woman from the UK presented some alarming statistics that the younger generation of CP children is less educated and requires more severe care than kids in similar studies a decade before. And it really got me wondering. To what extent is this lack of drive towards education a product of a particular child's actual inability to learn and absorb knowledge and to what is it caused by all the factors external from child's intelligence. Their own mobility and spasticity, but also transportation, accessibility, stairs, lack of lifts, logistics. I have always said that I was able to go to school because my parents were lucky enough  to get an apartment with no stairs leading up to the elevator,  in a building with a lift and on a relatively low floor. This may sound funny, but not all parents of CP children where that lucky. And if you think about all the struggle you'd have to go through just to get them out of the house every day, you'd lose passion to educate them as well. And this before we even get to school, before anything remotely related to their individual learning ability even has a chance to manifest itself. Before I moved to America, I had to accept those architectural barriers as my reality. This was my world. Things blocking me had nothing to do with how smart and driven I was and my career perspectives had less to do with my knowledge and talents and more with how someone designed a city around me to exclude me at every junction. And you think, this is life. You have to conform somehow to those barriers around you and find the things you can do. We chose my highschool on the basis of proximity, not my interests in math and physics. My father suggested I go into computing so my brother can help me along, get me a job, so I can be in that way productive. Not until I moved to America had I thought that there is another way to approach this. Not have me mold to the world's limitations, but mold the world around me so it can have less limits. In that sense I started to think of Conductive Education as a counter movement to the American accessibility trend. Yes, Peto says to try, to fight, to be the best that you can, but it seems that he's essentially saying change the individual, because the world will not change for him. And in that way, while I gained more ability and just enough to function in America, I do think it conditioned me to accept the world as is and expecting less out of life often feeling inadequate. Americans are getting rid of stairs, putting in lifts.  You can get around more and you get to experience more in life. But they also sit the children in wheelchairs early, don't promote developing the physical abilities, mobility, body awareness to that extent, elements I find useful even as I live in more accessible Florida. In my mind, both need to change, grow and adapt- the children as well as the surroundings they live in.

Sick, sick, sick

On Saturday I'm supposed to give a short presentation on my life story as it intertwines with Cerebral Palsy rehabilitation. My flight to Munich is all set. The problem is, I physically can't speak. My throat hurts when I try to swallow, my neck is in pain with every slightest move, my ear is irritated and as of six hours ago I'm on antibiotics and a bunch of colorful pills I can't name. Are you familiar with Murphy's law- if anything can go wrong it will? Welcome to my life. What was supposed to be the high point of my Warsaw visit- a celebratory dinner hosted in by honor by my brother and his wife with her world famous chocolate cake and cousins I grew up with, that I last saw maybe six, maybe nine years ago ended up with  a trip to ER and figuring out which Warsaw clinics are open Sunday. As I started to zone out right at the table my sister in law took my temperature to discover I had a high fever. Tomorrow morning I was supposed to make my mark as I was asked to give an interview for the Polish disability magazine "Integracja". I'm flying to Munich the day after. The germs- an unwanted gift from my mother- what she claimed was a slight sinus infection, but what with all the coughing and clearing throat sounds more like an asthma attack that she refuses to see the doctor for. But I did and guess what- I have some upper respiratory tract infection. As I was waiting with my father to see the doctor I rushed to use the restroom. It wasn't wheelchair friendly, it barely had a toilet seat attached and I had to use my father arms to lean on because there was nothing else I could safely hold on to. It's been decades since my father had to help me go potty. On the upside- at least healthcare in Poland is free. So far I'm sleeping, eating, sleeping, drinking fluids, sleeping and taking drugs. Six hours later I seem to be in a little bit less pain. Keep your fingers crossed.

Welcome to Europe.

On Saturday I'll be giving a twenty minute lecture on my life with Cerebral Palsy and how all the years in Hungary have helped me become more independent. The congress organizers have decided to sponsor three nights at a hotel, a bit odd considering I'm traveling from across the pond, the congress is three days exactly and I was asked to be there for all of it. That's part of the reason I've decided to go to Poland for a week (other than I haven't seen my family in years) - I feared I wouldn't be able to pull it off, and the idea is a bit ill-conceived. The conference starts Thursday and I'm arriving in Munich Tuesday. Sounds simple enough, right? I'm even bringing my parents to help me.... Wrong. Finding a wheelchair accessible hotel in Munich or anywhere close is a nightmare. A perfect commentary to anything disability related. Welcome  to Europe, you're not wanted here. There are stairs everywhere, there are lifts nowhere. Of course you can find some really expensive high end places for hundreds of euros a night, but I'm not prepared to make such significant personal investment into something I'm doing for others, something I was asked to do as a guest. We were planning to stay with my uncle in Munich, that's why we decided to fly there Tuesday and not the day after. A week ago he seemed excited to see us, but now it seems that something may have happened. We now can't reach him. We don't know where to go, what happened and if he's expecting us. The last two days were spent calling hotels, hostels, bed and breakfasts and agencies and in most places asking about wheelchair access felt like requesting door knobs made of gold. The whole trip feels like everything is falling apart, as every plan and every contingency falls through. Even the suits that my parents wanted me to wear proudly in Munich, waiting for me  in Warsaw, don't fit me anymore. A lot of stress, very little information, and that's just the first step. I'm ready to be done with this already

The Press release

Wheelchair-bound attorney Rafal Strzalkowski, who lives with cerebral palsy, will be a keynote speaker at the 8th World Congress on Conductive Education following the launch of his accessibility awareness nonprofit.

On Oct. 12 in Munich, Strzalkowski will speak about the importance of growing up with Conductive Education, an integrative education and therapy system for people with disorders of the central nervous system. Similar to the goal of the Conductive Education school in which he was raised, the Polish-born lawyer hopes to help disabled people become as independent as possible through the Florida Disability Access and Awareness Foundation.

“Being in a wheelchair myself, I’ve realized that people with disabilities are not really aware of the rights that they have,” said Strzalkowski, president of the FDAAF, which was registered as Florida nonprofit on Jan. 17. “I believe that information is key, so the more information you have – including knowing about your surroundings and how to get around by yourself – the better you will be.”

Because he grew up in Poland, Strzalkowski was able to attend the nearby Petö Institute for Conductive Education. Founded by Hungarian physician and educationalist András Petö, Conductive Education incorporates students’ development and personality characteristics to create a complex system of education and therapy. Through the FDAAF, Strzalkowski hopes to connect schools and businesses that encourage physical and emotional progress in disabled people.

“I’m educated and accessibility issues affect me today,” Strzalkowski said. “I know there are a lot of people who would benefit from better resources.”

In order to create an organization that serves the Florida’s disability community, which lacks information about legal rights and sidewalk accessibility, the FDAAF board of directors includes an architect, a businessman, a disability services provider and software developers, Strzalkowski said. Board member Paul Brophy is a business owner in Gainesville who has experience accommodating people with disabilities in his former restaurants, The Shamrock and Brophy’s Irish Pub.

“People don’t realize that a lot of places – a lot of businesses, like restaurants, bars and clubs – do not have any facilities for handicapped people,” Brophy said. “Their staff don’t even know how to handle it, they don’t know where to seat them. And a lot of people who are in wheelchairs don’t know that there are businesses and restaurants that they can go to.”

The short-term goals of FDAAF include providing links and through its website and organizing outreach to the local Gainesville community. The board is also working on developing a mobile app that provides information about which areas and businesses are wheelchair accessible in Gainesville.

“I want to set up a structure of people to be in charge of going block by block to evaluate their surroundings, actually assessing sidewalk ramps and continuity,” Strzalkowski said. “These are very important factors for wheelchair-bound people.”

The board expects to launch the app by the end of the 2013. Information about the FDAAF and its initiatives may be found at http://www.fdaaf.org.

In addition to sharing experiences about growing up with Conductive Education at the conference, Strzalkowski will present excerpts from his new book, “Never, never quit,” which chronicles experiences from his blog about overcoming disabilities, http://blog.lawyeronwheels.org/.

For more information about the 8th World Congress on Conductive Education, please visit http://www.ce-worldcongress2013.org/default_en.asp.

Writer: Danielle Torrent   
Sources: Rafal Strzalkowski, +48 789202594
rs(at)lawyeronwheels(dot)org
Media Contact: Paul Brophy, 703-819-7733
paulbrophy(at)fdaaf(dot)org

A technical visit

"There are so many things you need to do here"- my mom would say for the last two years. When I stepped off the plane in Warsaw I was expecting a very tight, time consuming agenda from day one. I've heard of many issues I simply needed to address that demanded my presence and  could not go on without me. Issues I might add, that would get a mention every time I called home. From formalities to doctors, from banks and picking up a new ID to the baptism of my new nephew and niece, I was the one missing component without which nothing could be set in motion. And I would get an earful  at least once a month. In October I'll be speaking at the World  Congress for Conductive Education in Munich. With a free flight from Europe I was offered I decided to go early and arrive in Poland, which is just east of Germany. I figured this will allow me not only to mentally prepare for the engagement, but also visit my parents I haven't seen in three years and brother I last saw face to face six years ago and also address all those supposed emergencies. Turns out there are no problems with my banking, my brother's reluctance to baptize his children has nothing to do with me and I couldn't pick up my new Polish ID because I'd never be here long enough anyway. My parents I guess just really wanted to see me and were looking for practical, non emotional reasons to have me come home. I did get to go to the dentist which after all the adventures of trying to find one in America and the expense gave me a peace of mind. I also got to meet my brother's children for the first time, something I greatly feared and my parents never understood. My mom loves kids and is very good with them, I am not. And she wanted to make the introductions right away. I haven't slept in 36 hours. I was on three different planes. Hygiene and restroom use were all a problem throughout the trip. I had long layovers. One flight was delayed and there was no chance of me making to that connection. Disability assistant in Frankfurt was walking with me to the other gate for about 2 hours and at one point we left the security cleared area and came back only to  be screened again. Then in Warsaw we were kept inside for a longer while because some one left a piece of luggage and no one was allowed to leave. Finally, dead tired I arrived home and wanted nothing but sleep. I couldn't even bring myself to shower.Yet my mom brought my brother and kids that date, turned on the lights, kept grabbing my face and attempted to wake me. I wouldn't have any of it and just slept right through it. I fell out of practice of being with other people in the house 24/7. Talking all the time, speaking to you or each other at the same time, slamming doors or walking in without knocking. Or suddenly just ending up in my room at once doing something else while I'm trying to focus and work. When I was younger it would annoy me a great deal. Now, I just treat it with more understanding and kindness. I tell myself they really love a  great deal. Then I tell myself I'm only here for ten days. I was hoping to lose some weight with more spread out, set meals while I was here, especially since my mom made a point to tell everyone that I'm now fat.  don't eat a lot, just infrequently and I'm under a lot of stress.  But I feel like I live with a couple of hobbits. Where one meal ends another begins. New people stop by to see me and cakes and ice cream always land on the table. My parents cook every day,can't get them to stop and can't offend their efforts by declining food.  Back in America my clients ask for updates about cases I handle reminding me that somewhere across the pond is my life now.

Re-learning

When I landed in Frankfurt on Wednesday I strolled around the airport for a bit looking for a restroom. A restroom I should clarify, that I could use. And it's not an easy task. I grew up in Europe, but the last nine years in America have spoiled me to expect the same level of accessibility I find back home everywhere I go.  First observation: be prepared to not find a wheelchair friendly cabin when you go into the mensroom. "One for you is the next one"- a man  washing his hands explained meaning keep on rolling down the hall and eventually you'll find it. It's very rare for me not to see a familiar set of grab bars whenever I'm anywhere public in America and mostly it's only the historic buildings and grandfathered in businesses I have any issues in. The second observation: the accommodations in America are pretty standard, regulated by law. You know what to expect, you know what it's looking like when you go in, you can easily develop some routine or procedure. The toilet is usually in the corner by the wall with grab bars on each. When I entered the German restroom I was shocked to find that the toilet was in the middle of the room with swinging bars on the left and right. I quickly decided I have no idea how to use it. Do I lift one and get in from the side? Do I hold on to both and turn around? It took me a while to figure it out. How to transfer balance from once side to the other  and pull myself up on the seat. It's been years since I saw a set up like this and figuring out how to make it work takes time. Yes, it used to be that I could use anything sticking out to grab and pull myself up, or lean against appliances and furniture. And it always was different, yet I made it work every time. Yet, back then I had a better awareness of my body's strength and weight and at what angle it'd be best to approach it. I don't have that skill anymore, because I don't have to. And it made it convenient. And it made me lazy   I often talk about how I grew up not having any of those accommodations back home. Growing up I'd use the sink and the toilet sit to balance my body. I knew to what extent I can depend on my knees, where is the best place to grab and pull, when to turn, how much energy I'd need for a move and at what angle. A few years before I left my parents renovated their bathroom. As part of the effort to simplify things and to not have me grabbing onto the sink anymore they've put a very thin grab bar, coming up from the floor, between the toilet and sink. Getting on and off was pretty automatic. Yesterday, the first thing I had to do was learning my parents bathroom. Where the things are and how to use them, because I fell out of practice. Yes, I'm not as energetic as ten years ago and I've gained some weight so it was bound to be harder anyway, but I honestly needed to figure out these things again. How to use the really tiny railing and how to balance my body on it. And yes, my weight and mobility level would probably require some new solutions. Where  to pull? At what angle to put my arms to stand up in the bathroom? I guess you can say I needed to learn to use the toilet again.  Then I needed to figure out how to crawl into the bathtub, something I used to do every day. Where to put my left leg and my right leg, how to transfer  my balance it all became pretty crucial on my mission to take a bath. I needed to understand my surroundings and also how my body works, what I'm safe and comfortable to do. I needed to adapt and figure out what worked for me. And it felt like I was doing it for the first time.