Wednesday, April 23, 2014

After the article

TOK.FM  the website counterpart of Poland's popular talk radio  published an article about me over the holidays. It's based on the interview I gave the station's shockjockey earlier this year. The publication was delayed by the  still developing situation in Ukraine. As the broadcaster shares an owner with the country's most read newspaper, Gazeta Wyborcza, for the most of Easter Monday my picture graced the top story spot on Gazeta.pl, the publisher's portal. My blog registered over a thousand additional views, directed from the article, a friend from Warsaw University wrote to me after ten years of no contact and random strangers begun commenting on my story. Many were positive. Some extended congratulations, few said they admire me, someone called me a real man. I'm not to be admired. I was clear from the get go, that I'm a product of circumstances- from my parents hard work on me from birth to our ability to afford sending me to study abroad. I've never said that my path should be emulated. My choices are my choices and my story is just that- my story. Still, I take some credit for being were I am today. When criticism started, it was ruthless. And completely missed the point of the article. One user wrote: Is this your idea of what disabled people can do? Not everybody can afford it! That's was not my point at all. I'm not saying anyone should move. I wouldn't move either if I had more opportunities back home. Somebody else said: If it wasn't for your parents you'd be just like other disabled on welfare without perspectives, to which I may ask, why are they without perspectives? Another commented :"All he did was study, he may be intelligent, but not the most intelligent". A funny thing to read from a person who never met me. In the interview I made great efforts to point out that I don't feel better than anyone else and given similar opportunities to work, move about and socialize I would never leave Poland. Still, some think I spoke out of line. So let me be direct to those who missed the issue: Why can't Poland create a more inclusive society? Disability has been a talking point back home for the last 25 years, but not much was happening.  What's this thing that separates Poland from the US? It's a country like any others. I assure you, we don't drink liquid gold and bathe in milk and honey here. But we have better laws. Keep in mind that Americans with Disabilities Act is a fairly new body of law. We're looking at a 24 year history. Buildings were not adapted over night or demolished to accommodate wheelchairs. It's  a process and an ongoing one- further measures were introduced as early as 2008. Inclusion, accessibility and awareness were not always a part of American legacy. But they did it. It was less about the cost and more about introducing harsh regulations and standards  in many areas of activity in one uniform act and strict enforcement . The text was meant as a comparison piece- while in Poland i'm marked as permanently unable to work in the US I'm functional and practicing in a high end profession. I'm sorry that /I chose one over the other. I don't think the article was written to praise me or paint me as "brave" but to ask what is wrong with a country that doesn't create equal opportunities? That prefers a monthly payout over leveling the plane. It's about laws. It's about recognizing the needs of a community, it's about awareness and public interest.

Monday, April 21, 2014

Easter

Easter in America is a far cry from the holiday I remember at home. If it wasn't for the few stores that closed for the day I wouldn't even know there is anything special about the date.  The Bus system that usually uses any official holiday to go out of service was running like every other day. On Monday, which in many European countries is a day off work everyone I know in Gainesville will be back working. So, if it was meant to be like any other Sunday I wanted to do what I do every other Sunday- and go by food for the week. As I was leaving my apartment to get to my stop, I noticed a few of my neighbors decided to take advantage of the grill in the middle of the complex. They were flipping burgers, drinking and playing beer bong. Someone brought a stereo and from the smell of it, something was burning. As I was about to exit through our parking lot the couple on the second floor asked me where I was going. They explained that Publix, the store I usually go to was closed and they tried two different locations when looking to restock on soft drinks. They must be very religious- my neighbors concluded. Suddenly my entire day opened up. But I realized that I needed to find a place to eat, since I wasn't getting groceries to make my own food. As I strolled along I saw my neighbor dressed all in pink. I commented that her outfit matched the Starbucks cup she held in her hand as well as the paper pastry bag. She told me it's a new  chocolate croissant  that the chain was launching and I should definitely try it. As I went further I met a familiar couple also with coffee cups and paper bags raving about the new pastries. Unlucky for me, about a month ago I decided to cut my calorie intake and get rid of the sweets in my died. But as I looked around downtown, all restaurants I stopped by where closed. The one place you could trust to stay open was indeed Starbucks. And I caved. A warm chocolate croissant it is. And a latte. I figured, it's a holiday. If I was back home, I'd be eating my mom's homemade pork-loin,  salads and cakes. We'd be so stuffed with the food that has to be eaten otherwise it'll go bad, that it'd be hard to move. Dayss of sitting at the table and eating. Eating, drinking, visiting, resting and watching TV. Here's something I never do at home. At 7 I was seeing a play at a local theatre. Shakespeare. I didn't pick the date. The ticket came with April 20 printed on it already. I would never even think that cinemas and performance venues would work as usual but it made my day. Maybe Easter can be about making new traditions here as well as the customs I remember from back home?

Wednesday, April 16, 2014

Wheelchair drama at the diner

A week ago I met up with my newly picked Board of Directors for a photoshoot in Gainesville's downtown. It's one of the beautiful parts of the city. It's also the area where accessibility problems are visible the most. From brick roads to entrances with a high threshold, it's called historic for a reason. We were meeting to take some pictures for the website we were reconstructing. That day, it was mostly headshots, but I thought that if by any chance we got to do a little more Downtown serves as a good illustration of problems a wheelchair user faces getting around- that would work on the website as well. And nothing explains the reasoning behind starting my Foundation, and the need for organization like that than images that speak to the imagination. We've spent a few hours posing and discussing our mission. Some of us drove there from as far as Jacksonville and it was the first time we we've seen each other in person. After a job well done we decided to celebrate and continue the conversation for a bit. It's hard to find more inspiring surroundings when you plan to spread accessibility and awareness. We decided to relax at Harry's- a New Orleans style restaurant with a nice outdoor sitting area. When we got there and asked for a table the waiting staff didn't know what to do with us at first. Then they asked us to wait while they engaged in some heavy lifting moving the tables around to accommodate my wheelchair. My group was annoyed. The staff clearly wasn't prepared for someone like me to dine there. To them- it was the perfect case for our Foundation to take on. Restaurants should have proper ready areas for people with disabilities and servers trained to act properly around them. As they pulled out a chair for me, the waiter would have me sit directly in front of the door, blocking access to the restaurant. We had to shuffle things a bit so I wouldn't be in anybody's way and I finally got to order. I wasn't upset. I've been made to wait so often, that I don't see it as a problem anymore. I'm not saying that it isn't a problem, but after a while you just learn to be patient. It happens a lot. And after a while you figure that most important thing is to eventually get your order and not sweat the small stuff. It quite a realization: how much these days I'm willing to excuse- be it a restaurant that doesn't know where to sit me, a burger place with tables too high for me to reach or a bus driver who tells me to wait for the next one because she doesn't like to struggle with the lift. I think I've been too understanding. I've accepted things I never should have. But my companions- they're new to my perspective. Something tells me if they had to be in my shoes, they would get upset at every turn.

Sunday, April 13, 2014

Driver

Every Sunday afternoon I take the city bus and go grocery shopping. This week was no different. I boarded route 5 downtown that stops right in front of Publix. The plan was- as usual- to get on that bus again as it comes by every hour, and take it all the way around as it drops me at my starting point with a heavy bag hanging from the back of my chair. The one thing that was different was the driver. Every week a helpful, funny and kind man assists me on and off the bus and I have to say I look forward to catching up with him on Sundays. My dose of humor for the day. This time he wasn't there. And the problems started.  The lady who drove it this time- to say the least wasn't very happy to have me on board. I get that to an extent. A wheelchair passenger requires transit operators to get out of their seat, lift a folding bench that has the straps and belts underneath it and secure me there. Getting the lift or ramp out also takes time, often requires to try getting them to work multiple times and gets the driver behind the schedule. It's hard to watch them struggle and not to feel like I brought it on them. But then, I'm  a patron. I ride this bus and just like everybody else on it I just want to get to wherever it is that I'm going.  This time, the ramp refused to fold back, the system wasn't responding to her pressing the button. Luckily for most drivers, with this model- if a problem like this happens, they can push it back manually  from the outside and it's not that heavy to lift. Someone else did it for her and we were on our way. "I'm not picking up anymore wheelchairs today"- she said "No matter what happens I'm not opening that ramp again". That wouldn't work for me. There was only one bus going around once an hour. I told her that I still needed to go home after shopping and no matter long I waited it would still be her and her bus going by my stop. There were no other routes I could take and her bus was the only one in service. "It's between you and RTS [transit system company]. I reminded her that if she sees me and she can't pick me up, she's supposed to call the dispatcher and they may be able to send out a van for me. She said she wouldn't call them, because she reported the problem already. At this stage things got really scary for me. I had no other way to get home. I forgot my cell so I couldn't call a friend, a taxi or the RTS dispatcher. As I was leaving, I heard her arguing with her company on the radio to get her a new bus. It seemed like they were getting ready to bring one to her. She asked me when I was planning to get back. I decided to give her two hours to make the switch, although I'm usually waiting at the stop again by the time the bus comes back. Two hours later she came back. I heard her argue on the radio with the dispatcher again. The voice said that there was only one supervisor and that he can't get to her from the other side of town. She said that she didn't want to injure her wrist but she was told to work with the ramp anyway. I have to say- the whole experience ruined my day. I usually look forward my shopping on Sunday, here I spent two hours wondering what was going to happen next and kicking myself for not having my phone. And as she was strapping me in and commenting on her work conditions I realized that her problem wasn't really with me. It didn't make me feel much better, but her issue was with her employer and how mistreated and disregarded she felt. As I was getting of the bus in front of my house I said I was sorry she was was having a hard time and wished her a great weekend although she made my day quite stressful.

Saturday, April 12, 2014

My life in a sentence

One of the newcomers on my Foundation's Board of Directors was summarizing my life story on a conference call: "10 years ago he moved to America and had a lot things happen to him then, including getting hit by a bus". I suppose you could view the last decade as a series of misfortunes. Yes, I was hit by a bus when crossing the street at night and if the driver hadn't heard my screams from underneath when I was pinned down to road I wouldn't be here to tell you about it. Yes, that same year I rolled down a hill while on a Spring Break in Puerto Rico, fell out of my wheelchair and hit my head, ending up in the Emergency Room on our very first night. Yes, I was held at gunpoint when I was stupid enough to decide to go to Subway for a midnight meal. Yes, a tow truck  almost backed into me when it tried to maneuver out of that small parking lot in my apartment complex. I was at a restaurant bathroom  once and decided to throw myself into the wheelchair  and I missed making a big dent in the drywall with my head. I guess I could write a book about my struggles with Immigration and my Law School. Yes, we could focus on the things that happen to me or talk about all that I accomplish and do for myself everyday. The way I look at these often scary events is that they made me so much stronger and I raised above them. I've been through it and now I'm here. And while those stories are often amazing to tell I don't really see them as defining my life. They're just that- Great stories to tell. I wouldn't know how to report on the great amount of fun nothingness I experience everyday. My life is not a whirlpool of dramatic events at all and if it wasn't for the 10 year backlog of experiences in America I would have very little to write about. My life the way I see it is the small things I do for myself everyday. The people I meet. The impromptu dinner I have with my friends. The work that I do, the things that I learn, the movies that I see. I don't want you to get the wrong impression- I'm not a sad, depressed loner who never has any fun, but things that bring me joy are hard to capture on paper. When I heard someone describe my life only through the most traumatic bits that are few and far in between I was surprised. Because this is not how I see myself. But at that moment I understood how someone who didn't know me could. But the truth is, as terrifying as some of the things happened to me were I don't even see myself as a victim there. I'm proud of I handled myself in the aftermath and a lot of it was character building that shaped who I am today.

Monday, April 7, 2014

The wristband.

I saw a familiar face today. One of the girls who put together the short video about me was passing through town. She wanted to say hi and introduce me to her parents. The entire family helped me finish my shopping, walked me to the bus stop and then took turns positing for pictures with me like I was some kind of celebrity. Their daughter told them a lot about me. But then- Cerebral Palsy was no stranger to them. Her sister with a more severe form of my condition passed away a few months ago. To honor her memory they've put together a nonprofit and seemed very excited to get started. It reminded me of James Klausner and his determination to do the same for his son. A nonprofit is not easy run and I hope that they have enough energy and motivation to keep it going. I've seen many fizzled out. If they were in Florida, I'd gladly get involved with them in some capacity. But they are in Georgia. Things seem to be going very well for them so far. Apparently, so many people pledged to donate to the cause that they qualified for the expedited processing of their 501(c)3 (tax exempt status) application and were awarded it in a month. I've been told that 80% of requests for a faster route get denied. I wish things were going that well for my Foundation! They asked me if I was interested in doing something with them if somebody drove me to Georgia and I cut them off by saying yes.  I'm always interested. It seems like a worthy cause and they are good people. And hey, I've never been to Georgia. As we parted ways and I was waiting for a bus with a grocery-loaded bag hanging from the back of my chair she gave me a purple wristband. She wanted to give to me for a long time, but between single lines exchanged on Facebook from time to time it never happened. She no longer lives in the city and when she does pop in and out I don't ever get enough advanced notice to plan anything. But she really wanted to give me that wristband and I really wanted to have it. We've met up if only for few minutes between me getting a few boxes of Special K Meal Bars and mushrooms in the produce. As I've put it on my weaker hand, we turned it inside out to reveal the engraving. It said Toya Tuff. I've never met her sister, but I'm proud to have it.

Friday, April 4, 2014

Equality

Krystyna Janda, Polish Actress famously awarded at the Cannes Festival, caused quite a stir recently. She expressed a longing for the times when women were treasured by men. When it was in bed taste not to hold the door for a lady, or pull a chair or help with a heavy suitcase. She wrote a piece about the stronger sex after a man she was traveling with on a train refused to help after she asked him to put her suitcase in the overhead compartment. He did say he had a back issue, but what offended her was the fact that he didn't apologize for it. Criticism followed. Why should a man apologize for having a bad back?- some readers asked. For most- it turned into a discussion on gender equality. Why should a man assume a macho position if a woman is neither struggling or weak or elderly just because some antiquated tradition dictates it? Wasn't the women liberation movement all about having the weaker sex finally seen as equal, able to fend itself without a man's permission or assistance. Janda's stance came across as her saying- I need a big strong man to come and save me, because I'm not able to do it myself. It's not as if she tried to and lacked strength, she just assumed a man must do it for her and expected it to an extent she went online to do about it. "She just wants it both ways"- one user observes- "Equality when it suits her, special treatment when it's convenient".And it got me thinking about all the times that you could have accused of a similar attitude. I dedicate my career to promote disability inclusion. I started a nonprofit that's dedicated to promoting a positive image of people dealing with impairments. I wrote countless essays about how much I want to be treated just like anybody else. How the wheelchair is not really limiting me and with my skills, dedication, hard work ethic and drive I could compete with just about anyone. How I hate the word "special" in special needs. How I don't need to be pushed and most of the time I'll get there - even if it takes longer. Yet, I have to say- I didn't mind skipping the lines at the Universal Studios theme park because it allows wheelchair users to do so. It saved my family hours of waiting time and although I didn't have any medical condition that could have worsened if we waited with everybody else. I don't mind when I get to go into a crowded movie room when all the sits are taken. When I get a free upgrade on a domestic flight, because it's more convenient for the airport staff to sit me in the business class than carry me to the back of a plane. That public transit is either cheaper or free. That I can renew my passport at 50% off. Or that I have special sitting at a theatre. That if I miss a bus I get to have a minivan pick me up. That a lot of times when I'm waiting in line people invite me to get in front of them. None of those situations are in any shape of form emergencies related to my disability and yet- I enjoy them- I admit. And yes, I'm sure that there's a "his life must be so hard" justification for most of the times I get something extra and get singled out. And yet, I don't mind it. Nobody likes to wait in lines and with a 40 minute wait at Universal we would have done anything not to be like the others passing out in the heat. I don't mind the little perks, but I don't expect them. I don't have that "Move! I'm in a wheelchair" attitude. Some of my friends do- one of them even convinced a man at a cinema box office that the five friends I came with are there to assist me and should go in free. I'm pleasantly surprised every time it happens. Human beings are complicated. And I guess - since I can never be truly like others anyway, I don't mind being treated differently when it's something good- since I'm seen as different anyway.