I think I may have ruffed a few feathers. I was as polite and respectful as I could, it was not my intention to offend anybody, but when ACENA- the American association focused on Conductive Education offered me free membership in exchange for a speaking engagement I had to decline. I credit CE, a once-popular rehabilitation method for kids with Cerebral Palsy with making me as functional as I am today. And I stand by it. And I always said that I would proudly speak about my experiences growing up with the method. I just don't have much to do with it anymore. I'm sure organizations like ACENA are a power resource, for parents eager to help their children, CE practitioners- the Conductors or other educators involved in the community. I'm neither- although I've been called a Conductive Education success story. Three years ago my response would have been different as I worked for the Jordan Klausner Foundation that run a Conductive Education Academy in Gainesville. Back then I had a vested interest in bringing as much attention to the method as we could, getting as much support and resources as we could in hopes of attracting parents and kids and showing them this a method they should consider. Perhaps it would have saved our school from closing. But as I have moved on, much of it is in the past. That said, I've always tried to make it clear that I would always be willing to do fundraising and speaking engagements for Cerebral Palsy and Conductive Education causes. And I'll always talk to ACENA members about pushing shared interests when and if they reach out to me. I'm an open book. I'm excited to do things for a living that allow me to impact people's lives- as I'm an open book and talking about what it was for me back then and what I think about it now gives me great joy and I love to travel. I just don't feel I should join an organization of any sort to do that. Truth be told, I don't believe in joining something just for the sake of being a member. I only sign up for things I can be actively involved in. The thing with ACENA is, I'm not even sure what they do and how they do it and why would they want me amongst them. I'm sure that it is a wonderful institution and people that deal with CE on daily basis. I always feel bad about turning an offer down- because it comes from passionate people wanting to make positive change. I just feel that it's as practical as me offering a free American Bar Association membership to a Conductor- it just would not be of much use to them. But then, on another level- I prefer to be neutral and maintain the ability to criticize from the outside looking in. I think that's what the CE world is lacking most. I also feel membership implies at the very least involvement if not- endorsement of what you're signing for. I wish them all the luck growing their organization. I just don't know how and why I'd fit in. I'm at the stage in my life right now where I reevaluate my life goals, the type of career I want to have with who I want to do it with and how. If I ever end up working with a CP cause, which is an exciting thought- without a doubt I'd join as many associations that supports it, and be as active in them as they let me.
Friday, March 7, 2014
Wednesday, March 5, 2014
The TOK FM journalist emailed me yesterday. My radio interview (already edited to a 5 minute segment down from an hour long conversation due to poor quality of the Skype recording) was to be accompanied by a lengthy feature- but it's now delayed. The story would have popped up on the station's website, but also on the portal of its parent company- Gazeta.pl, which is the country's newspaper as well as most read online publication. The regular work of all media back home is upset by the events in Ukraine and everyone is watching and waiting what will happen next. Poland is just across the boarder. Whatever happens over there is likely to spill over and affect all of us. I may be in America, but like so many people in Europe I'm scared for the future of my country and the order, growth and peace it took us decades to develop. I was privileged to grow up part of a generation that not only doesn't remember war, but also wasn't there to witness the country rising from ruins and going through years and years of reconstruction. My dad and his bother would play "war" under their living room table. Famously he told my uncle stories about their adventures on the front Even my older brother in the early 1970's used to draw Soviet tanks inspired by semi-propaganda TV shows about Polish-Russian war alliance and everlasting friendship. The 1990's saw the collapse of the Russian sphere of influence and we all were looking eagerly to the future. To the west. To growth and stability. That excitement I was lucky to be part of remember, while I was spared the fear and devastation of war. And my parents' hope that in the XXI century, despite the centuries of painful history of being sandwiched between Germany and Russia, if our military and economic ties in Europe are strong enough nothing bad can happen, because it would not be in anyone's interest to bring about turmoil. Poland has been actively pushing for Ukraine's drift towards UE and NATO and for a good reason. Unlike some of the other former members of the Eastern bloc we are not surrounded by friendly nations. Western Europe politically speaking ends at our Eastern boarder and that always is a cause for concern. The emotions were running high over the last few days and with the internet the world watched live as it happened. What will Merkel do? What will Obama say? I think whatever happens next it's good to remember that a war is never an impossibility regardless how we may be progressed, united and developed. Yes, I understand that Ukraine has a politically and historically complex structure- quite frankly not only with Russians but also with Poles. One of the great accomplishments of the post World War II Europe was settling of most if not all of major territory dispute. A lot of Polish media seems to be drawing comparisons between today and the late thirties. How the West gave in to Hitler hoping to appease him. Hoping he'd stop with what he got. And after Germany invaded, Russia did the same from the East a few weeks later. To protect our eastern territories from fascism no doubt. After all, Poland at that time wasn't an ethnically uniform country either. And all while the West strongly protested and did nothing. Polish media are watching the events as they develop closely and for a good reason. Not only because those things are happening right next door. We have enjoyed the longest period of peace in Europe in modern history. While conflicts happen, they're usually limited and internal. But it also tests our new NATO and UE alliances and assurances. What will the West do? Obama, as loved he may be in America doesn't come across internationally as a firm, strong, determined leader. Europe, between its own leaders, interests and agendas has a hard time figuring itself out. So between the statements, demands and protests, most likely nothing will happen. And Ukraine will unfortunately pay the price of the world's inability to do anything.
Monday, March 3, 2014
A few days ago I received a package. My mom, between all the things she has on my mind right now dealing with my father's prolonged hospital stay remembered to send my replacement parts for my Swiss, custom built wheelchair. Now it will be up to me to find a place that will be able to put them in for me. Those who follow my writings may remember, that I got the chair as part of the settlement after a near death experience with a Gainesville city bus nine years ago. During my European visit last fall where I was speaking at a disability conference in Munich, my dad determined that my four wheels are no longer structurally safe. I get a good use out of it just riding around, and all the folding and unfolding on planes, car trunks and pick up trucks got it pretty banged up. A lot of the essential parts are now broken. The whole thing may collapse under me at any time. We tried to fix it up a little bit for the time being when we were in Europe. My father used a seat from an old hospital chair and screwed it to my frame. A shop in Warsaw replaced my front wheels and back tires and a few missing screws for the anti-tippers that drag on the ground, but they were running out of time for more severe repairs. My dad was always in charge of doing the tune ups to my chair. He wanted me to know in and outs of the construction as well, just like other people know how to care for their bikes, but I'm not mechanically inclined. I do know when I need help however and when to look for it. I know I rely on my wheelchair for... anything and whatever the stake, I must keep it in good repair. It may be something as small as hair, dirt and rust getting into my small front wheels. From time to time they need to be unscrewed and cleaned. If I don't maintain them in good condition, the front gives me a lot of resistance making it that much harder to wheel around. My Air-Lite model chair feels heavier all of the sudden than most of those bulky hospital units. When my parents came with me to America to get me settled in Gainesville, they thought it was essential for me to have a mechanic or a person to look over my chair. If something happens to it, I'm stranded. Often I compare my wheelchair to a fitting accessory, like sun glasses, just to show how comfortable I am with it and in it and hows I don't mind it at all. But in reality it's more like an essential body part. When I was waiting for my new wheelchair to arrive after the bus incident (and it took us 7 months to settle and get one) I was getting around in an aluminum chair I brought from Poland as a temporary mean of transportation, for emergencies. I guess it's true what they sau, nothing is more permanent than a temporary fix. That small chair was never intended to serve me as long as it did. Once I made a mistake of bringing it in to the bike shop on campus. They lifted it up to clean it and the grabbing clasp broke one of the aluminium bars. The chair kept sinking in and collapsing until I found a welder in town to fix it. At that point I realized that whoever I entrust my wheelchair to clean it or fix it, they need to know what they're doing and it's essential to my existence. Luckily, the Gainesville company that took the measurements and ordered the chair for me has been very good with any service calls I've had, from clearing my wheels to replacing the worn out axles or fixing the loosen wheels or re-aligning my brakes. The equipment in the box that I have yet to open will need to find its way on there and soon. One of the things that broke, through years of wear and tear, use and abuse is the bar that supports the sit and entire construction. I'm a little bit lower if you will and deeper in the sit, but so far nothing has fallen off. I fear that it may be just a matter of time.
Friday, February 28, 2014
I may often jokingly bring up that I'm old by Gainesville standards. Most people I meet here are after all 23 or younger. I may be older than most people I know, but I'm still only in my thirties. You wouldn't have guessed that however if you went through my mail. At first I thought that these are anonymous junk offers. I didn't think much of them and just threw them away. Life insurance and final expenses ads. Brochures advising me of governmental benefits and the cost of a funeral. Apparently for most of them there's no medical exam and no one gets turned away. But then the volume of the senior tailored in my mailbox increased. I'm encouraged to join the AARP -which is an association of retired persons in the US and a wide range of AARP endorsed services and products , from hearing aids to cell phones now want my attention. I didn't think much of it when I was invited to participate in a bone density study for people over 65. Actually I thought it was pretty funny- good luck getting me walking up the stairs. I gave it as a joke to one of my friends in his 50's saying- they want you to call this number. Yesterday I found an envelope from UF department of Aging inviting me to participate in yet another senior activity study. It had my name on it and my address, it wasn't something that simply everybody gets. A while ago a friend of mine suggested that I must be on some kind of a list. And the more that I think about it, the more I think he must be right. Yes, University of Florida law school maintains a contact list for its graduates, perhaps it was an inter departmental mishap? Maybe it's something that got out of UF Disability Resource center where I have been registered for many years. Whoever sends these out must know I have mobility issues, just wrongly assumes it must be because of my age. That I need assistance. That I need resources. That my quality of life suffers and they need to improve it. My friend suggested that they must must know that I'm very involved in the local disability arena. I started a disability non profit after all. And I wouldn't make a big deal out of it at all if I didn't have to clear my mailbox out of this junk they stuff in there every time I open it. Cards, envelopes and brochures of various sizes that I need to carry home just to dump it in the garbage right away. But when you think of it, it is quite offensive. To assume that a person with a disability must necessarily be contemplating funeral costs. Or looking to get a government subsidized cell phone. Or placement in some assisted living unit. It never seems to be crossing anybody's mind that you can have a disability and be fine with it. Be active and productive and making the best out of it every day. That I'm independent. That I don't get social benefits of any kind and actually have a profession that many consider high end. And that I'm the one having to dispose of all this junk I don't even care to open.
Wednesday, February 26, 2014
Throwing myself into my nonprofit work really helps me get my mind off things at home. (You could drive yourself crazy thinking what is there that they're not telling you and how it might end up). And for once things appear to be picking up. We've been interviewing new volunteers for the last few nights. It seems that people really want get on board bringing their own ideas and fresh perspective. Some of these were old friends who want to help out and our excited about the project. It's funny when someone you have known for a year or two if not more ends up having a skill you didn't know about or turns out to be exactly the professional you were looking for. I had my doubts, but the platform that Linked In put together for non profits really helps us get the word out. While not everybody that applies is always a new face in my circle, this set up allows me to simply say: We need help. Can you lend a hand? And for now we are making the connections. And it turns out that just as clueless I was about what some of the people I had already known did and could help me with, they had no idea that I've put together a nonprofit and what it was for. Over the weekend we met a young lady eager to help with a businessplan. Today we had coffee with someone who might just make the mobility app a reality for us. Even if it doesn't work, brainstorming with these people and sharing our mission with both friends and strangers gives me a little boost of energy. This just might work! This past year we got a little discouraged. Some of the people that we started the Foundation with fell off the project right away. Not that they cared to contribute much in the first place and their motivation for getting involved will forever be a mystery. But regardless of how this turns out, I'm really excited by the thought that I don't have to be alone in this and some people are not only willing to help, but are eager to get started. And we always say: It's OK. Take a few days to thing about it. We don't expect the impossible. In fact we don't expect anything at all. If you feel like you don't want to do it, it's fine, just tell us. And don't be afraid to turn to us if something comes up and you can no longer be involved. So far writing back to some of those applicants or just browsing through submissions has been a really fun journey. And that makes me want to open it up to even more people, so we can make the world more disability aware one small town at a time. If you are in Florida or even anywhere in the United States and feel like you can help us with: marketing, fundraising, app design, putting together an action plan for us, web design, photography, networking, PR or anything else to help us get FDAAF off the ground reach out to me. I for one am ready to get started. Visit http://fdaaf to read about what we hope to accomplish. To make things even more amazing, at the same time that we were bringing new faces to the organization, old faces resurfaced. An old friend who helped us draft some initial press releases and web content decided to come back and help some more. And this really makes me want to see what happens next, where this crazy journey will take us.
Monday, February 24, 2014
Every so often the physical distance between me and my family really gets to me. They're in Poland and I'm in America, and whenever something happens I should be there with them.For the last few weeks my father has been in a hospital with his heart condition. A couple years ago he had a double bypass and a valve replacement. Now it started to act up again and for a while he was in a very serious shape . Between his blood thinning medication, his infections and antibiotics he strained himself pretty badly. I know I've written about this sense of isolation before. And how things in my family have happened through the years and they didn't even tell me. I didn't even know about my dad's original heart surgery until after the fact. This time around my mom keeps me updated. I call home a couple times a week and we communicate via Facebook. I look for cues in the tone of her voice for the things she's not telling me. Does she feel sad or a little bit more optimistic. If I haven't heard from her in a while I assume there's nothing bad to report. But when the news first broke, I was even a bit afraid to open my email or look at my phone in the morning. You want to put it off for a bit, not face the day and what it throws at you just yet. I know it's silly. But sometimes I like having that extra five minutes of not knowing, before I compose myself. I know it's there's some news. I see my phone blinking. But before I go on I take a minute. My mom is now the only source of information, my eyes and ears in the story. And it's an odd feeling how you want to know more, you want to do something but you can't and you hang onto every bit of news for a sense of hope. I don't have any other means of ways to know. And I can tell that as soon as other topics pop up in the conversation, things must be looking a little better. One thing about my dad is he is pretty stubborn and you can't hold him down.
Friday, February 21, 2014
I understand that charity work is not everybody's cup of tea. When somebody approaches my nonprofit saying that they want to be involved I'll be the first one saying are you sure you want to try? Do you really want to take this on? Do you think you can spare the time? Nobody will be upset or think any less of you if you turn around and say I've changed my mind. Just be upfront about it and let us know. I'm fully aware that I can't expect amazing things from people who volunteer their time. And I'm grateful for all they do, I'm thankful that they're even trying. But what I do expect is for people to be able to come up to us and voice their concerns and tell me that they can't or do something, even if they say they would. This appears to be a common pattern. Our nonprofit first got started with a group of people who felt energetic and ready to change the world, most of whom fallen of the grid without any explanation. For some, contact just stopped. I don't know what they were expecting and how fast this thing will grow. I suspect there were people who first jumped on and wanted to tag along and see where it takes us. Again, I understand that circumstances change. You may even overestimate your own ability. But as we are all adults we owe it to each other to be upfront about things. If you don't want to be involved don't get our hopes up. Had I known how little what everyone declared before we formed would actually happen I'd think twice about forming a nonprofit. But it's here and I'm determined to save it. Still, over the next months we had people approaching us with different ideas. But the pattern i always the same. "-Hey I can be your grant writer", "I'll put together a business plan", "I can do an amazing presentation". And then nothing. No contact. And we've gotten it from people of all ages quite frankly. And for months we've been coming up with excuses between me and the other board members. More than a person in question obviously cared to explain themselves. It must be because they're busy. Or they're overwhelmed. Or they started a job. It's one thing that you say you'd do something and then don't do it. And that's bad enough. But to not even explain anything? To not even say I will not do it. And we've been telling everyone we met at ever junction. Probably more than they cared to hear but we wanted to reassure them. It's OK if you say no, if you walk away if just announce it. In fact we've been saying it so much I feared people would feel like we want them to quit. One excuse we came up with recently was, "they're just unable to say NO". I think no is a perfectly acceptable answer. It lets you figure out where you are and move on from there. It's upfront and honest. Still, many people will just not say it. As if there's some benefit in keeping everyone in the dark. We'll find out eventually, but it will drag on. Is the concern that you don't want to be the one who disappoints and is unable to deliver? For me the only disappointing part is luck of honesty. I now go into those interviews not expecting much. Even if the initial impression is great. But then I still have hope that what we've done can work. And that pushes me forward.