My determination

"What do you plan to accomplish?"- a journalist from the Polish disability magazine "Integracja" asked me the day before I boarded a plane to Munich where I was asked to deliver a keynote address at the World Congress on Conductive Education. "I have a debt to repay"- I said, but that was only part of the story. The 2 hour sit-down interview almost didn't happen.  Just the night before I was rushed to the emergency room with a 38.4 C fever. On Monday I was on day two on my three day antibiotic regimen. Hearing that I had to speak on Saturday, the doctor prescribed something that she described as pretty strong, but she had also warned me that it may not work and I'd have to get sick days. But the Congress, the event that happens every few years was not something I could easily get sick leave from. These people flew me from Europe because they wanted to hear what I had to say. Most likely they'd be understanding if I really couldn't deliver but  I after all that it took to get me over there I didn't want to be the one to disappoint them, so close to the finish line. On Sunday night my mother looked at me like I was a crazy person when I refused to cancel the interview. I felt this was something I had to do at all cost, to afford the Congress every ounce of publicity that I could. It was my understanding that they had not been extremely proactive with the media and they were not exactly coming up with creative ways to use me for their PR either- which I would have been more than happy to do. So, there I was Monday afternoon, falling asleep as I was getting dressed, having no speaking voice, just trying to get through the day. My regular wheelchair was in repair and we were hoping it'd be done by Tuesday- which it wasn't and most of my time in Munich was spent trying to fix it up rather than exploring. I met the journalist in a 20-year old hospital style wheelchair with flat tires I could barely navigate on my own. I could barely speak and my drugs where in my manpurse. It was then than I thought, perhaps I'm overextending myself and biting more than I could chew. What am I doing forcing myself like this with my throat on fire and an obvious ear infection? Even the next day after I landed in Munich I was in no condition to interact with people. My uncle offered that I take a nap. I was out like a light and didn't feel much better after it either. One thought- just get through Saturday. And I did. But it did make me wonder, am I that determined or simply that stubborn. Is there a difference and if so- w hat is this thing driving me?

The Peto problem.

Some 25 years ago Conductive Education was what at least seemed like the leading approach to Cerebral Palsy. Parents from all over the world would rush behind the iron curtain to the Peto Institute in Budapest to give their kids a fighting chance. I don't think the method ever particularly caught on in the United States. But everywhere else it felt like everyone has heard about it and anybody wanted to try it, often sparing no expense to get to the centre. I guess an ounce of hope is more valuable than gold. But something happened to the Peto Institute over the last two decades. Something I don't yet fully comprehend. It seemed that somewhere between the high point of it's popularity and today it has lost all its glory. I understand why Americans don't know what this method is. But imagine my surprise when I sat down with a journalist from the Polish leading disability magazine Integracja, talking about my life and my then upcoming keynote address at the Munich congress, to discover she hasn't heard about it either. When I said "It was really big in the 1980's", she laughed. Then I realized. The 80's was a really long  time ago. I might just as well have been asking if she remembers World War II. She was to young to know anything about the Peto hype and the Institute seems to be doing very little to remind people that it still exists. It needs to reach out to people. It needs to put together a strong image, a message of hope that says "We have this method, decades of experience, it really works and it can really help your child". The problem is, the Peto Institute never needed to reach out to parents. Parents always came to it. But times change. And if you don't evolve, you stay behind. They need a strong and aggressive PR. I wanted to say the Institute needs to think of itself as a product, but it has always been a product. It was the only enterprise in the Eastern bloc I can think of where you needed dollars for the very expensive stay regardless of which side of the iron curtain you came from. Back in the 1980's it was a money making machine, while in most eastern states it was illegal to have any amounts of foreign  currency. And I guess, decades later the center could not keep up with how the market and the world worked. We now want information. We want proof, we want research. In the age of the internet we want to be able to compare things side by side. The Peto Institute was used to parents turning to it quite blindly. Not only coming to it first, but asking very few questions. And then the Institute provided very little understanding about what they were doing. At the World Congress on Conductive Education it started making a little more sense. One of the presenters said that it was Peto himself that was protective about his method and told his Conductors to keep it a secret. That way all you can copy are if you will the external features, if you will. The furniture. The exercise routines. But none of the ideology. None of the theory. And the secrecy continued throughout the decades. When I was there in the 1980's my parents were never allowed to take any pictures. They saw some of the exercises, but never were disclosed the reason and theory behind them. The Peto Institute felt it can gamble by keeping the most to themselves and yet keeping people intrigued and interested enough to keep coming back. And it lost. With new methods, new concepts, new research coming to prominence in the  information age you have to reach your client. You need to sell your product. And as much as you can you have to be transparent. The Institute seems to be sitting on decades and decades of success stories and experience. Where are the publications? The case studies? The research? The comparison of data over time? It seems  that all of the Conductive Education publications appear having no connection to the Institute itself. It's a number of often prominent, passionate private people who dedicate their time and put things together often in a semi-amateur fashion wanting to keep the legacy alive. And where is the Institute in this? Shouldn't it want to save itself the most? Shouldn't it be doing all the ground work. Setting up congresses, commissioning research, publishing in a multitude of languages, bringing back success stories for talks, tracking down former pupils. The only, yet limited push that I see always seems to be on Peto the man that made it all come together, not Peto the method. The question is: if everything that happens in the world of Conductive Education takes place with minimal if any involvement from the Institute, can it be saved against its will? When will it start to be a lot more proactive on the PR front to stop itself from falling into oblivion. This requires time. And planning. And money. You can't simply have a press conference these days and expect people to not only come but care about it. We're bombarded with information. Every day you're competing with news stories about anything from Kim Kardashian's undergarments to terror attempts in Kenya. Whatever you do it needs to be thought out and continuous.  There was a World Congress on Conductive Education. Sadly the world didn't seem to care. The most mentions that I saw of the event was in relation to my key note address. But this is because my own foundation, FDAAF, felt it was important to get the word out. So, we've written out a press release in accordance with the Associate Press stylebook and then we paid to have it distributed. Many outlets got it. Few picked it up- Conductive Education isn't exactly a hot topic. But the Peto Institute isn't doing itself any favors by voluntarily eliminating itself from the media.

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